Friday, August 30, 2013

Of Hate Mail & Loving Children -- Part 3


I was thoroughly prepared to end this blog series at two entries.  I thought I had shared all I had to say about advocating for acceptance of our children, with both the outside world and within our own hearts.  But then my girlfriend Darcy had to go and mess everything up by sharing this article from the Huffington Post about a woman who had a nasty note left on her car when she parked in a spot marked disabled.  Of course, it made my blood boil, and it was relevant to the conversation we've been having, so I was compelled to add one more part to the series.

The note left on Suzanne Perryman's car after parking in a disabled spot read, "You are clearly not disabled -- Shame on you."  Her article is an emotional response to the author of the note, explaining that everything with special needs is not always apparent to the naked eye.  She acknowledges that she was once like this accuser, but is now glad to be set free from perception that sees things only as black and white.  In the video following the article, she explains that the judgmental memo on her windshield left her in tears at the end of an already trying day.

Yet, Suzanne Perryman stops short of detailing how many of us are out there, raising children with disabilities that will rarely be visible to the naked eye.  According to our friends advocating at Invisible Illness Awareness Week, 96% of people living with some sort of chronic condition have one that is "invisible".  According to the government statistics they cite from 1997, 20.6% of the population lives with some sort of disability.

Think that's crazy?  Look at the three beautiful children in the picture above.  One suffers from a severe bleeding disorder which can rarely be seen with the naked eye.  Because the most critical and severe bleeding is internal, hospitalizations are not unusual.  Use of a wheelchair is sometimes necessary when there is an active joint bleed occurring.  Rest is one of the required cures for these bleeds.

Another of these children suffers from a yet-to-be-accurately-diagnosed rheumatoid disorder.  Severe joint pain is a regular part of the day.  While this child knows that activity is good for the joints, by the end of the day, simple walking may just be too much to bear.  People would call this child "normal", seeing a smile even in times of great discomfort.

The last of these three children has asthma, severe allergies to medications, environmental pollens of various types, and foods.  Additionally, severe ADHD, Asperger Syndrome, and sensory processing issues make life complex for this child.  The neighbors have often judged us to be horrible parents where this child is concerned, largely because of the behaviors.  Oh, if they only knew...

And that is exactly what is wrong with human judgment -- We don't know what we don't know.  And even if we think we know, we live in that faulty black and white world that Suzanne Perryman so eloquently writes about in her article.  I can recall my son having a life-threatening bleed that put him in a wheelchair for two months.  Prior to my doctor-authorized hang-tag arriving in the mail, we put the application in the windshield in case we got stopped by the police for illegal parking.  I would deliver him to school every day, parking in a disabled spot, hauling the clumsy wheelchair out of the back of my SUV, assisting him into the chair and into school.  At pick-up time, it was the same routine in reverse.  And despite seeing my son in the chair, people were still calling the school, complaining that I was an unauthorized vehicle parking in a disabled spot.  It was clearly much easier for them to complain than it ever was for them to help me.  The weight of their stares as I walked him in and out of the building each day was oppressive.

Yet, I make my peace knowing that while these fools judge by what they think they know, the Lord sees the heart.  He has the inside scoop on what is really happening.  He will vindicate me.  I have only to rest and trust in Him.

Meanwhile, as I made the case in the previous two posts, I need to reflect His glory by counting my children as blessings and educating those around me.  With the graciousness of God, I need to remember that I was once a fool like them too.  I need to be longsuffering with their ignorance and show them the way.  And when I am so weary and downtrodden that I lose my cool with those who don't know any better, I need to apologize to them and forgive myself.

Pray for those who leave nasty notes of any kind.  Pray for those who treat our children as if they are a burden.  And remind those you come into contact with  that everything may not actually be as it first appears to them.

PRAY:  Father, I get so worn down by those who judge me or treat me harshly.  Renew my strength.  Holy Spirit infuse me with the ability to do what is right in the face of all that is wrong.  Heal my heart when it is broken.  When life bumps into me, let love spill out of me.

NOTE:  The 2013 observance of National Invisible Chrnoic Illness Awareness Week is September 9-15, 2013.

1 comment:

  1. My heart goes out to you and yet between my son and I, I feel like we live this daily too. How much do you share? Should you feel compelled to share? Do you want people to think you are a bad parent and it's a behavior issue, or do you want to explain there is more to it than that and then give your child the stigma? the only way to fight the stigma is to share and explain, but it is one thing to fight the stigma when we are the person with the illness, it's another to make our child be an advocate when he or she never asked for it. {{hugs}}

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