Saturday, May 11, 2013

More Tidbits About Special Needs Parenting

Life with special needs children can be a wonderful learning experience and also an incredibly challenging one.  I often need to reach out for words of encouragement to help me get through the day (or week, or month).  Here are a few quotes that I can relate to.

“Anyone can give up; it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” – Christopher Reeves

It is not uncommon for our mealtime to be meltdown time.  Isaac works odd hours and has a 45min drive home so I do dinner with the kids on my own most of the time.  It is a challenge to keep up with both Joe and Christine's not so patient appetites.  I've tried feeding them separately but it doesn't always help.  I think the evening is just the "witching hour" for my kids.  Sometimes all heck breaks loose and I want to run out the door screaming when daddy gets home from work.  But most of the time... I hold it together.  I try to make light of the situation with Nate, who gets so frustrated by the tears (justifiably so).  We will sometimes play music during dinner which sometimes helps calm Joe and Christine, sometimes its just a distraction for Nate and I.

"The only disability in life is a bad attitude.”  - Scott Hamilton

Some times I think I am the one with the disability in our house.  I have times when I am ungrateful, bitter, discouraged and spiteful.  I can't see all the good in my life because I'm so consumed and overwhelmed with the challenges that I feel forced to face on a daily basis.  Sometimes it is really hard to get out of that pit once I'm in it.  Prayer and support from those around me helps a lot.

“Go as far as you can see; when you get there, you’ll be able to see further.” -Thomas Carlyle

So much is uncertain with Joe and Christine not having a definitive diagnosis.  I have very little to give me an idea of what their futures (and mine) will look like.  Its scary to think about the possibilities.  So out of necessity, a day at a time is all that we can do. 

"The central struggle of parenthood is to let our hopes for our children outweigh our fears."
-Ellen Goodman

We have many fears about their future... but we do have hopes too.  But frankly its easy for me to lose sight of those hopes at times.  Over the past few years.  Our hopes have changed.  When Isaac prays with the kids at bedtime he goes around the room and prays for each one of us individually.  He used to pray for Joe to "catch up developmentally"... then he started praying that he'd "get stronger and more mobile", after awhile it changed to "he'll learn to crawl and talk", now he prays for Joe to learn to "walk and to communicate". We may not have the same hopes that we once did... but we do hope for their future and for ours.

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