Am I Insane?

Hello - it's me again, Maniac Lab Mom - I mean GenMed Lab Mom - and I need - something!

Help!

Marie - GenMed Lab Mom

Tell me I'm doing the right thing! Tell me I am not insane, crazy, cuckoo or otherwise nuts.

With all that is happening in my life  -  daughter getting married, 31 year-old son with duchenne, job that is highly, highly, highly demanding - I am adding yet another piece into the mix.

The soon to be happily married couple

It will take me away, by myself, to a foreign land, with a language barrier, at a time when administration of our research grants program will surge.

I am going to Nepal.

Nepal! Nepal! Nepal!

I am excited, scared, and excited again.

Why, you may ask? To trek the Himalayas? The jungle? To find the cat in Katmandu? To see the blue sheep or the red panda or cuddle with the cobras, vipers, and pythons? And let's not forget the omnivorous crocodile (which, I'm told, eats anything).

You might think it's to observe the newly formed Federal Democratic Republic, celebrating it's fifth year of independence from the Nepalese monarchy?

Or the people. And now you're getting warm. I am personally interested in the majority Buddhists and Hindu culture and religion. The temples, the rituals, the life.

That will be just a sideline.

What I'm really, truly, and humbly trying to do is to find out if I can I help a friend in need. Not only a friend but his friends too. Many of you know him from Facebook, Nirmal Khadka from Muscular  Dystrophy Organization Nepal (Banepa Kavre Nepal).

Nepalese boy with muscular dystrophy

He writes: "Desperate situation for DMD boys in Nepal,whole day stay alone in such a condition,without food in time,no proper care, cos family goes at work whole day to run everyday life and there would be non at home to care them.They live burden life in this universe."

Petey, 31, with Duchenne

I cannot lie to you, I'm not sure what I can do.  But I keep thinking, what if I lived in Nepal? What if that were Petey, my son, who cannot move, forced to be alone all day so I could work?

And I have to do something.  

This will be a 'fact finding mission' totally paid for by me.  To figure out what these boys needs are that I might be able to provide.

friends from work

But first things first.  I asked for help and I mean it.  
 
What can I bring as little gifts? One of my colleagues suggested crayons and coloring books.  It has to be portable and small and probably not food. If I could bring food, what about candy bars?

Suggestions?

 I'm getting fashion advice from my Indian lady friends (India is a neighbor of Nepal).  In the villages, I am to wear long dresses with leggings and a scarf.  Sounds do-able.  Someone at the lab called me the fashion police.  Believe me, what I know about fashionable can be found in the dusty corners of my dresser!

My Indian Lady Friends

But I digress. Please help me decide what to bring to my friends in Nepal - add a comment.

Star Shining Bright

I am in awe.
 

Star Bobatoon

Star Bobatoon talked to our scientists and parents on Wednesday. And - this is one of the best parts - Hurricane was there! He punctuated his mom's talk with running commentary: "um-hum", "yep", no way", delivered with just the right amount of dryness. He was interested enough to pay attention but teenager enough not to pay too much.

And then there is Star. She - well - shone! She engaged the audience - we were yelling out 'I hate muscular dystrophy!' like our lives depended on it - like Hurricane wanted to in her book, "I Hate MD - Loving a Child with a Life Altering Disease".

I want to pause to thank the parents that came. One of my old friends from a decade or two ago, Adele, was there with her son, who is planning on studying architecture CAD. (Jason, you'll be fabulous! Adele it was wonderful catching up with you.) And the folks there from the Muscular Dystrophy Association, Tricha and Annie - a new friend and an old.

We heard about the 'Star Principal'. If you can remember S T A R you can benefit.

S for Start Anew
T for Take time to live, laugh and talk about it
A for Accept the tears and ask for help

R for Replenish your spirit

From left to right, Aditi, Jack and Yi-Wen. GenMed-ers enjoying a food moment.

The cool thing was the reaction from our scientists. There was standing room only. They were riveted to her every word. It would not be an exaggeration to say that 20 people came up to thank me for having her here.

And listening to Star, seeing her words light up the faces around me, made me realize: while we parents wait for science to catch up to our hopes to save our sons, it is as much our hopes that sustain them when they are pipetting at midnight or eeking out a bit more for supplies, or wondering if this 'one more grant' they're writing, could be the thing that makes catching up possible.

Star, thank you for sharing your hope.