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A Village of Prayer and Hugs without Tears

October 18, 2011

It’s like a storm
That cuts a path
It breaks your will
It feels like that
You think you’re lost
But you’re not lost on your own,
You’re not alone

I will stand by you,
I will help you through
When you’ve done all you can do
and you can’t cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won’t let go

I remember hearing that song for the first time last spring.  It had me pulling over to the side of the road, sobbing in my car.  The doctors had been testing my youngest daughter for liver cancer and seemed very confused- and not really relieved- to not find any.  Weird, I know. As it turns out, she had an elevated AFP (alpha-fetaprotein) which is usually only found in a certain type of liver cancer. When they figured out she didn’t have that, they started running more tests. I was left hunting down the lab results. I got them from my pediatrician, though he admitted he had no idea what they were looking for. Unfortunately, I did. I quietly took the paper from him and thanked him. They said what I feared. Her IgA was low. This was what the specialists were looking for and they had found it. The only explanation for this combination of results was a progressive, degenerative and fatal disease  called Ataxia Telangiectasia, or AT for short. My daughter was dying. That was reality. It would be about 2 months before we could get the genetic testing back. Until then, I was supposed to remain hopeful and pray.  It’s a terrifying and lonely feeling when you are faced with the likelihood of outliving your child and watching them suffer along the way.  I sent out emails to everyone I knew, asking for prayers, updating them on tests.  Each conversation where I had to communicate between doctors and therapists and relatives took just a little chip off of my heart.  It left me feeling broken and defeated. People would tell me how strong I was. I smiled graciously and knew inside that I was falling apart.  Messages came in from family and friends and people I didn’t know, telling me that their whole church was praying for my little girl, even though they had never met her. The doctors were sure.  Apparently God was swayed. The Friday before Mother’s Day, a nurse called with the test results. Negative. I crumpled on the floor.  I got to keep my baby girl.  I am certain that the village of prayer that had assembled on my daughter’s behalf is responsible for that result.

I need that village again tonight.  My friend just got some terrifying news about her son. He had been in remission after his second relapse of cancer.  It turns out that the cancer has returned.  Having had just a taste of what she must now be going through, there is nothing I wouldn’t do to take that pain away from her.  Obviously, there is nothing I can do to make this go away or to make it better. But I asked her yesterday, if there was anything, anything at all I could do for her.  She looked me right in the eye and said, “Just pray.”  

I have known a lot of very strong women.  She must be the strongest. She might humbly deny this. After all, when you’re there, it doesn’t feel at all like strength. It’s just what you do for your baby. It’s being a mom. But she has steered her family through this battle three times already, and held her head high as a pillar of strength for those around her. I know that she must have explained the details of her son’s illness over and over again, with a steady voice, advocating for her son and making certain that he gets the treatments he needs with no miscommunications between doctors.  She comforts those around her who fear for her child. All the while, I know that it takes just a little more from her reserves.  “Just pray,” she says to me.

If there was something that you could do for someone that only took 2 minutes each day and you didn’t have to leave your house or pay any money, but it was something that could mean absolutely everything to this person, wouldn’t you do it?  I’m asking you, my village, to do this. I don’t really care if you worship God, Jesus, Buddha, Allah, or multiple deities. I don’t even care if you are atheist or agnostic.  Take a few minutes tonight, and each night, and pray for this precious little boy.  Pray for him and his family that they can find strength and comfort in each other. Pray for the surgeon, that his hands are guided by God.  Pray that this boy can endure the treatments he needs and that he is healed.  And pass this on. If you lead a church, or go to a synagogue or you have any friends who pray, or even those who might. Make this happen for this little boy.  His name is Nick. God will know the rest.

When my youngest daughter’s future was so uncertain, it became very difficult to hug her without crying. How much we take for granted. Each hug reminded me that there might not be many hugs left, and so tears would inevitably roll down my cheeks. I hope my friend can soon hug her own son without that worry. That she can squeeze him with a big bear hug and dry eyes. Thank you.


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