Wednesday, February 15, 2012

Feeling the love

In response to our Puj video I got this email:
"Dear Rian - I stumbled across your Puj video from a recommendation about Puj's products. We have two little girls, our eldest will be three in October and our youngest is just about to turn 16 months. Your family is so beautiful and your eagerness to expose your children to the new and unfamiliar is just wonderful! I will be thinking of you, your work and love for your children, and of course your youngest girl for a long time to come. At the risk of coming across wrong, but wanting to avoid (to me) the greater risk of not engaging, I had to ask you ... what can we do to help?
Yours,
Louise"

I happened to get this email after a long day of battling our insurance.  I cried reading it.  I racked my brain for an answer.  What could someone I don't know, who doesn't live near me, do for us?  Here is a clip from my response:
" I have thought and thought and wondered and contemplated.  In the end it seems to me that the biggest help is what you have already done: reaching out.  I have truly felt so loved and cared for by your message.  To have someone step through the fear of being misunderstood and extend their friendship is so powerful.  Thank you."


With time and the help of a few web sites (http://www.liamsland.org/lm-faq/ and http://www.kotm.org/I have compiled a list of a few more.
  •  Donate money.  Find an organization that funds research for a child's particular condition, organizations they are involved in, or what hospital they attend and make a donation on behalf of the child or person you wish to help.
  •  Donate your time.  Help with a fundraising event for even do one on your own.  Collect inspirational quotes and send a thoughtful email of encouragement.  
  • Donate your faith.  A friend recently shared this piece of wisdom with me, "When someone is in the depths of sorrow or stress they cannot be expected to pray.  Their plate is too full.  We then must be there to pray on their behalf."  
  • Donate someone else.  Do you know a boy scout who is looking for an eagle-scout project? A business who needs some tax write offs?  A youth group in need of service?  Get them involved.
  • Donate your talents.  Do you sew? Help modify clothing to a child's special needs or make them a Snug Hug if needed. Do you like to cook?  Make them dinner or prepare snacks for their next hospital visit.  Like to read? Do some online research about the child's condition.  Loan a book for the parents to read during then next procedure or audio tapes for a long hospital ride.
  • Donate your thoughts.  We have been the grateful recipients of a few care packages.  One was full of family games to help get us through the long house-bound winter.  One arrived just yesterday.  It had puzzles, Valentine candies, and other fun presents.  In the end it wasn't even what was inside the package that meant so much, it was knowing that someone was thinking about us.  Or, like the woman this post started with, send an email.  It doesn't cost anything, but it can make a huge difference.

In the end I don't think it matters what you do, just that you do.  Thank you Lousie and the rest of your kind.  My life is bettered because of you.

5 comments:

  1. I just saw that Maaike is going to be on the news tonight. I look forward to watching it :)

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    1. Funny, you knew before I did. A friend just called and told me. I'm really curious to see how it ends up. I was crazy nervous. And thank you. I love reading your blogs too.

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  2. And p.s. I loved and agree with this post.. but that's pretty much a blanket statement for all your posts.

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  3. Rian,

    I'm curious...do you still have to sew things and alter clothes for Maaike? I thought I had the monopoly on altering clothes for special needs. :) Will she likely always need this?

    Also, I want to see that news clip??? Can you send me a link? So exciting!

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    1. I sew very little for Maaike these days. I have mostly become a thrift store v-neck junkie. I am pretty sure you still own the market on alterations. :)
      There is no cure for Maaike's condition, so she will have to deal with its effects her whole life, but we are hoping in the next year or so to get to a point where we no longer need the tracheostomy. We shall see.

      Let me see if I can find a link to the news article. If I do I'll post it.

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