Sunday, March 8, 2015

notes from a referral



...On July 20, 2011, age 11 months, Bayesh was seen by a pediatrician and was reported to have marasmus (severe malnutrition), stunted growth, plagiocephaly (asymmetrical flattening of the head with a flat frontal bone and an open anterior fontanel), a head circumference below average between -2 and -3 standard deviations, acute gastroenteritis (stomach virus), and diaper dermatitis (diaper rash). Weight at 5kg (11 pounds). It was reported that she has a scar on her right wrist joint. Her nutritional status was reported to be inadequate, her developmental status was reported to be not satisfactory, and her overall health status was reported to be not satisfactory at that time...



Friday, March 6, 2015

All a friend can do




We moved to Austin from Spring, Texas in August of 2012.

A month later, the day before we got our referral, I got the news. The news from Spring that something was wrong with Jake, they weren't sure what, but they were pretty sure it was cancer, but they weren't sure what kind.

Days later, I got the other call. That it was cancer, and that it was everywhere. Everywhere. His legs, his pelvis, his abdomen, his skull, his jaw. The jaw part upset me so much. That his tiny little four year old jaw was full of baby teeth and cancer cells.

The news did not get any better.
It got as bad as news can get.

Michelle kept me updated in texts and calls. And I felt the frustration of being three hours away from my beloved Mardon, Jake's mom, where I couldn't help. I couldn't do Mardon's laundry or take her meals or watch her four other hurting kids or clean her fridge.

I constantly texted Michelle with desperate pleas asking what I could do.

She'd try to come up with small long-distance-doable tasks. But the reality is, when they diagnose your child with a cancer that kills 70% of it's victims, there flat out isn't much your friends can do.

Except pray. You pray a lot. You pray tearfully and desperately. You pray even though you are 70% sure that your prayers won't be answered the way you want them to be.

Then, after two years of torture, which is much longer than anyone thought he'd stay, the week comes where you keep your phone on you all the time and walk about in a daze and wake up in the morning scared to check your texts until finally the one from Michelle comes at about six that says "He's gone."

"We're waiting for the funeral home. She's cutting his fingernails now."

And the thought of cutting the fingernails of your 6 year old for the last time is too much, it's just too damn much. 

So you hold it together until the kids are at school, when you finally let go with that soul coughing sob that you haven't experienced since the last time a friend lost a son. 

And then what do you do?

Then, then every time your own seven year old son, the one who went to preschool with Jake, the one whose handmedowns you passed on to Jake, every time that son says, Mommy, will you tuckle me in?, you do it. You do it. You do it when you're tired, you do it when you're aggravated, you do it when you're in a hurry. You stop and you do it, every time, and you do it the best that you can, with extra kisses and extra tickles and extra prayers. You breathe in his hair and you feel his skin and you kiss his fingernails that need cutting. You savor it. You thank God for it. And sometimes, lots of times, you do it tearfully and desperately, for Mardon.

Because, aside the prayers - the never ending prayers - appreciating tuckling him in is the only thing that a friend can do.


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