Saturday, January 23, 2016

A View From the Top of the Fence

Some mornings, it just hits you.  

You realize you have a glimpse into a lifestyle that others are simply incapable of even comprehending, through no fault of their own. 


I didn't plan on being in this unusual position.  Straddling the fence.  Not really in either camp.  Just sort of perched... but I'm learning to count this vantage point as a privilege.  


There's a fence between the "special needs" parents and the "normal" parents.  Those on the "normal" side of things peek through the knotholes of the fence to the "special needs" side and say "I don't know how you do it.  I could never do that.  You must be very special people to be given a child like that."


The people on the special needs side don't often have time to spend with their eyes against the knothole watching the normal parents.  But sometimes the normal world leaks through and they get a glimpse.  And their reactions differ, sometimes by the day.  Anger, disappointment, rejoicing with those who rejoice, mourning, enjoying being reminded life goes on, sadness that their child isn't experiencing that world.  


I read "Dear Exhausted Mom of Littles" this morning.  I love the sentiment.  I do.  Moms need to hear that they're not alone, that they don't have to do it perfectly, that they've got what it takes. And for two of my children, the entire article is definitely true.  But one of my children gives me a different perspective on a couple major points, and they really hit my heart because of my position on the fence.

See, my 4 year old has Crouzon syndrome and a Chiari malformation and autism.  I consider myself perched on the fence because she's able to walk and run and is extremely verbal, and I fully believe she will be an independent and productive member of society as an adult.  There are parents with children with these diagnoses who are very soundly on the special needs side of the fence, who don't have that hope.  But I'm not on the normal side of the fence either, because every day her diagnoses affect us.  She needs some accommodations to function at her best, and we have to keep her special brain and body in mind when we discipline lest we "provoke her to wrath." 


Yes, I am trying to work myself out of a job.  But there's a different time table for us.  I hear people talk about how much easier 4 is than 3, how they can dress themselves and put on their own shoes and coat and buckle themselves.  But that's not my world.  Some days, my 4 year old can dress herself.  Some days she simply can't.  Some days, those shoes go on.  Other days, I don't even make her try because it's not worth the inevitable meltdown and cries of "I can't do anything!" 


I won't always be this tired?  When she's a teen, and a front comes through, she's still going to be in pain.  I'm having to accept that.  And in the middle of the night, when she's crying in pain... I hope I still hear her.  And I hope by then I'll have come up with better pain management techniques to help her.  So yes, I may be this tired for much, much longer than most "normal" parents. 

But I'm perched up on this fence, so who my heart really aches for are those I can see on the other side, who aren't working themselves out of a job.  


They won't always be this tired, no... because the odds are they will bury their child.  


They aren't working themselves out of a job, because, without a miracle, their child will always be completely dependent.  


They look ahead at the years to come, and instead of an image of an independent child growing up and moving out, they see darkness.  They don't know what's ahead.  Or they know and don't want to think about it.  They watch their child deteriorate.  They pray for another child to die so their child has a chance to live with a new organ.  They see unending days of diapers and tube feedings and fighting pressure sores.  They see hospitals.  Days, weeks, months in hospitals.  And they know there's no guarantee they'll walk out of that hospital with their hands as full as they were when they walked in.  


They're not super heroes.  They're moms and dads.  Just like you and me.  This is the hand they've been dealt.  And they get up every day, every night, and put one foot in front of the other. They suction the trach,  They change the diaper.  They check the IV pump and see which nurse is coming today. 


I guess I just ask you exhausted moms... occasionally, think about the other side of the fence.  Don't just thank God you're not over there.  Pray for the moms and dads who are there.  Find someone and pray specifically for their child.  They're all over Facebook and CaringBridge and dozens of other sites.  It's not about making you feel better about your situation.  It's about being a support for that parent and that child, though they may never even realize it.  Maybe when your children are older you can practically serve a local family.  Maybe you can contribute to a care package or write a note.  Even if "all" you do is pray and write on their message board that you are doing so...

I guarantee, when you glimpse the other side of the fence, and you keep your eyes open, and you pry a board off that fence... you'll see your heart expand.

No comments:

Post a Comment