Thursday, January 24, 2013

tHERsDay: One Day More

Parent Prayer For Special Needs

Tuesday night I attended a community workshop for Estate Planning and Guardianship for parents of children with special needs.  It was all about Wills and Trusts and Social Security and Medicaid and all those things that you don't ever think you'll need to worry about when you're rubbing coco butter on your belly dreaming of your little baby.  All these things you know so little about because this world is a very different world than that of the normal populace all around you.

It was a wonderful presentation and highly informative, though honestly a bit overwhelming because of all the emotional heartstrings that get strummed.

The presenter was fantastic and very unique in that he was not only a financial planner but also the father of a 19 year old daughter with Williams Syndrome and the brother of not one, but two grown adults living with special needs.  He saw what his mother and father went through.  He experiences it with his own daughter.  He gets it.  Totally gets it, which made this presentation so incredible in the way the information was delivered - with practicality, with insight, with real life examples, with sensitivity and with inspiration.

In the beginning of the night, as he was giving his little intro - his background, credentials and personal experience - he recited every parents prayer when they have a child with special needs.

"When you're a parent to a child with special needs, you wish to see them live a long, happy, healthy life.  And that you live one day more."

There was silence as he took pause.  Great pause.  This man, in his late 50s with 19 years of parenthood experience to a daughter with special needs, with a lifetime of experience living with his two brothers... this man who anyone would say was at a place of complete peace and acceptance with everything was overwhelmed by the magnitude of the words he spoke.  Even now - even still.

And so were all the parents in the room.  I saw a grown man in the audience, burly in a flannel shirt, wiping tears from red rimmed eyes.  We got it, real deep, we got it.  And no matter how "together" and happy and accepting and in love with our child and our lives we are... there is a place in our soul that, when the wind blows from a certain direction, reveals a tiny emptiness.  A little pocket of grief.  It never goes away and you never know what or when it will be bared.

Of course, he recovered quickly and we all moved on.  We all wiped our tears and moved on, 'cause that's what folks like us do... we get it done.  We get it done and pray silently that we live just one day more.

And we are uplifted by stories like this one below - I hope you take time to read it.  I have always thought high school boys sucked - the stereotype of the self-absorbed, hellion, girl-crazy, disrespectful and surly teenage boy has long dominated my brain.  But, there are some good ones out there too and these are a few of them.  Their parents should be all kinds of proud.

Read the heartwarming story HERE.


Elizabeth said...

I do love that Special Needs Parents' Prayer, although I'm not sure that my sons would approve! I'm gearing up for the big conservator/guardian proceedings -- going to a workshop next Friday to being the paperwork. Ugh. It hardly seems possible that the girl I protected through a special needs trust, a will, etc. so many years ago, is now nearly eighteen and will need to be divested of her rights so that I can make all decisions about her welfare.

kario said...

Lovely. I hate that there is a need to create all sorts of special trusts and wills and deeds, but I love that the guy who presented it to you was walking the walk. What a gift!

And that story you linked to! Wow! Tears. Love that school, those kids.

icansaymama said...

Wow, that prayer totally touched my heart! My eyes welled up with tears instantly!

It is like you said, most of the time we are happy and content and then all of a sudden someone asks a question or says one sentence and we are shaken. It happens to me so often. It is like someone just has to push the right button.

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