Friday, December 7, 2012

My Grown-Up Christmas List - The Special Needs Mom Edition

Image: FreeDigitalPhotos.net
 "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." ~ James 1:17, NIV

We hear it playing on radio stations at this time every year:

No more lives torn apart
And wars would never start
And time would heal all hearts
And everyone would have a friend
And right would always win
And love would never end
This is my grown up Christmas list*

While I'm not inclined towards sappy and poignant music (No, "Butterfly Kisses" is not one of my favorites), these lyrics hit me in a deep way a few days ago.  Faced with grim personal circumstances, I could relate to the song's desire for human anguish to suddenly be cured.  Aside from my own grief, there seem to be far too many heartbreaks in this life and inexplicable suffering.

I found my mind ruminating over what might be on my grown-up Christmas list.  So much of it relates to some aspect of our challenged lives with special needs these days.  If my wishes were to come true:
  1. No more painful comments would spill out of the mouths of  well-meaning individuals -- Why is it that the world thinks it's their job to admonish you when you're down.  Have they walked a mile in your exact same shoes?  The worst is when it's a Christian who uses Scripture to make sure you know that you should, "Give thanks in all things," "Consider it pure joy when you face trials of many kinds," "Suffer like a good soldier," etc, etc, etc.  Then there are the people who think that things like, "It can only get better,"  "You're fortunate to have..." (you name it -- healthcare, a roof over your head, an Aunt Edna who loves you), "Be glad you don't have..." (again, you name it -- bubonic plague, cancer, Lindsay Lohan for a twin), etc, etc, etc.  Apparently, none of these Christians are aware that Jesus asked the Father to spare him his cup of suffering if possible nor, evidently, have they heard, "Like one who takes away a garment on a cold day, or like vinegar poured on a wound, is one who sings songs to a heavy heart." (Proverbs 25:20) [Read on, if I haven't totally alienated or offended you with those quips yet.]
  2. Justice would come to any who give us grief in the school disabled parking -- Catholics are right.  There IS a Purgatory.  It is more commonly known as school drop-off/pick-up.  Otherwise responsible adults act like completely out-of-control fools when it comes to this daily duty.  They zip too fast through parking lots, they behave in ways that would land their kids in detention and they stick their noses in each others business.  Our son does not always need disabled parking.  However, when he is having an active bleed going on in his lower extremities, he goes to school in his wheelchair.  I have witnessed any assortment of the following bad behaviors regarding disabled parking at the school:  a) Non-disabled vehicles taking up all the disabled parking space; b) People misusing their disabled parking tags to pick up a fully ambulatory child; c) Individuals complaining to the school that I don't have a handicapped parking tag (we went from 2 temporaries to now applying for a permanent).  Really?  What would you have me do with the wheelchair you see me lugging in and out of the back end of my Yukon XL twice every day?
  3. Accessible places would actually be completely accessible -- Our local US Post Office years ago added a long concrete ramp to the front entry of the building in order to comply with the ADA.  I have yet to see any wheelchair-bound citizen maneuver this means of entry because it would be completely impossible.   The turns are too tight.  The doorways too narrow.  And, like the front office at my children's 5-year-old school building, there are no door-opening buttons for those in wheelchairs.  Merely acting like we are helping those who truly have mobility issues when we, in fact, are not is actually a slap in the face.
  4. Doctors would live the lives of their patients for just 1 week -- Arrogance would suddenly fade if our doctors had to walk a mile in our shoes.  Maybe they would suddenly realize that they teach us to advocate for ourselves when our children are first diagnosed, then they get angry with us when we use that self-advocacy in standing up to them.  Perhaps then they would agree that no one knows our children better than we do.  Their dismissive attitude towards us and our parental expertise might even wane.  If doctors had to live the lives of us or our kids for even 1 short little week, maybe we could all work as a team rather than working against each other every time we come to them for help.
  5. My child's relentless suffering would end -- No more lives torn apart?  How about starting with the anguished cries of my child?  My heart feels wrung out after 12 1/2 years of tears, screams of "Please, make them stop!," thousands of needles, struggling with peers and stress that never takes a break.  I'm tired of him curled up next to me wondering how scientists can make such advances yet can't find a better delivery system for his medication than through IV injections.  I am crushed every time I hear him whimper, "I can't do this another day."  It is hard to hold back the despair and bitterness when it never seems to get better.
I could go on and on, but I thought I would keep the list short.  While I may express my desires with a bit too much snarkiness, my heart really yearns for peace in the midst of the daily battles.  I'm not asking for the impossible, but the faith-filled and the miraculous.  I am asking for that which only heaven can provide.  I am looking for the promises of Revelation 21:3-5 to come true.

PRAY:  Father God, shape my heart, gently soften it, so that my only wish is that Your will be done on earth as it is in heaven. 

~ Barb Dittrich

*"Grown-Up Christmas List" written by David Foster (music) and Linda Thompson-Jenner (lyrics), 1990.

2 comments:

  1. Oh, how beautifully written this statement is...and SO true for those of us who have these issues every day! Disability rights truly are the last great "civil rights frontier" in this country...and others who don't get our lives need a real education! Thank you for your honesty!

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  2. I'm using this as a starting point for a similar post -- from one special needs mom to another, {prayers} and {hugs} and may this Christmas bring understanding and awareness of the reality we face, and our children live, every day.

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