Tuesday, May 6, 2014

Thursdays With Marthe

This is a photo of me with my friend Marthe.  We share a lot in common.  Our mothers are best friends, we're both married to total rock-steady guys and we're (more or less) stay-at-home moms to pre-school children.  We’re also the same age.

But Marthe, whose name is the French version of Martha, has the added complication of living with advanced ALS, the eventually deadly “Lou Gehrig's disease.  At present she can only move her right arm and her head.  She uses a 400-pound motorized wheel chair to get around, her home has been re-modeled to accommodate her increasing disability and she gets her nutrition twice a day from a feeding tube in her stomach.

The joy of her life is her two-year-old son August, born before she knew that the occasional foot drop she suffered was the harbinger of a deadly disease inside her.  He is the picture of healthy, like a cover-of-a-cereal-box boy.  He is playful, outgoing and exuberant and loves his ”Mama” more than he can actively express.  He goes to daycare five days a week now as it's impossible for his mom to care for him and she really can't safely be alone with him.

Her greatest fear is that he'll grow up without really knowing her and so every Thursday afternoon she and my mom spend a few hours together so that my mom can write up her life story.  So that when August is 15 or so and hates high school, or doesn't make the basketball team, or thinks he's met “the one” he can reference his mom's experiences and feelings at the same age.

And what a slew of experiences she has had. My mother has transcribed her experiences running marathons; training as a paratrooper in ROTC; leaving the business world to go back to school to become an ICU neuro-nurse, learning to fly a plane. 

Sadly, these are just memories now as the disease progresses.  Marthe suffers seizures from time to time, the worst when she's alone.  But she knows the signs of an impending “grand mal” and can open the necessary medication with the help of her teeth.

I saw Marthe in Atlanta a few weeks ago.  We met with our kids at a playground, Marthe and company arriving in a wheelchair-equipped van.  Her mom came to help and my mom came along too.  We laughed about the normal day-to-day stuff you deal with as parents.  I told her how my Eva had recently gotten a karaoke machine and then wanted to test it out at our local Applebee's. 

She told me how she deals with the restrictions of her "handi-capability" as she terms it.  She has come up with her own strategies for handling her active son. "I rig up a baby walker with a rope and can cart him around the house on my wheel chair," she told me.  Sometimes she will throw gold fish crackers in the path that she wants him to follow in the house, or if she needs him to get away from something. 

When he is doing something that he's not supposed to do, Marthe has a way of getting him to pay attention.  She says she read it in a book once, but can't remember where. She will raise her voice slightly, in a different “mommy tone” entirely, and say, “August, look at me.”  He stops whatever he's doing and rushes to her feet.  He places his hand on her lap and listens to what she has to say.

Why do I write about Marthe?  My mom friend? My contemporary? My inspiration?  Because I don't know what else to do.  When I am frustrated, when I question why God would do this, to this family, to these people, I have to write.  It's the only way I know.

I complain about wrangling two kids at the playground on a daily basis.  Marthe doesn't complain at all and she can't wrangle one bit.  I complain when our dishwasher needs to be emptied or there's a pile of laundry on my bedroom floor.  Marthe has to wake her husband up at night if she wants to change positions in bed. 

Marthe will tell you she most likely will not see August start Kindergarten. She talks very honestly about her death, how she wants to be memorialized and where she wants her ashes spread.

She is a reminder, I think, that we must appreciate what we have.  I don't mean to sound trite, but there's a reason the cliches work when you're talking tragedy or rites of passage.  They are the most appropriate way to acknowledge what's happening. So, this mother's day especially, I'm grateful for friends like Marthe. And, it should be noted, for my own mom and her place in all of this. My mom, who first got to know Marthe's mom and then Marthe, and now is helping Marthe get her story down on paper.

While we were at the park that day, August picked a flower and handed it to her.  Then, my daughter Eva followed suit and returned with a flower for me.  We were calling them our “mommy flowers.”  When we took this picture, Marthe asked me to place her flower in her hand.  She couldn't reach, or move her arm to do it.

We smiled, and later decided to keep our already wilting “mommy flowers.”  I'm not sure where mine fell later that day.  Eva asked for it back at one point while we were driving in the car and I acquiesced.  Then, later, I couldn't find it.  But just before I handed it to Eva, I remember thinking that even though the petals were already drooping, their vivid color remained so vibrant.

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