Friday, October 10, 2014

Sinking Ships

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Today I had a day when you wonder just how did I get to where I am now.   Lots of things lead up to this feeling today.  A whole bunch of life complications become intensified when you have a child with special needs.   I never imagined our life would be like this.  The financial strain feels like I'm being smothered.   Yet out of desperation to help my son I make complicated decisions like signing on the dotted line on a promissory note.   We also are juggling multiple therapies that are out of pocket costs while Medicaid feels like my enemy, and it's hard to tell if there is anyone even in your corner anymore.

But I got to this really hard place in life out of great love.   Profound love for a little boy Noah, and a fight to help this precious soul who was given the short end of the stick because of a birth injury that didn't have to happen.    And maybe I'll have nothing to show for it - when your success in life is often judged by the material things in life.   But I'd like to think that when it's my time to be called to heaven that God will take my hand, and simply say "Job well done."

There isn't anyone on earth trying harder than I am.  That's why it's so difficult when you can't seem to tread water or swim faster than you are already swimming. To a large degree most all special needs families are sinking ships.  We just keep trying to fill those buckets of water to prevent us from going under.   When it comes to your child you just don't know how to give up.  There is this built-in-drive that doesn't know how to throw in the towel.  A universal hope that things will get better, no matter how dire they may seem today.

Each day there is a new problem to overcome, a new challenge that wasn't there yesterday.  And sometimes you wish you could just hit the pause button to catch your breath.  There are so many things that make special needs parenting harder than it needs to be.  Granted it's not easy when your child is 100 percent dependent on you for all aspects of his daily living.  That comes with it's own mixture of heartache and joy.  It's all the outside things that are mostly out of your control that are even harder than caring for a child like Noah.  Equipment you can't get, therapies and intensive camps you'll never afford even if you fundraise for the next thirty years, help that isn't there, family that has dissipated, emails that feel endless that are bad news about insurance denials and therapists transitioning to different jobs, nutritionist calls to return, and for many parents who have children with special needs, IEP meetings.  The list goes on and on.   We're juggling really two things.  The actual care of our child, with being our child's personal secretary and primary advocate.

I'm so ready for a ship that doesn't feel like it's sinking.  I want to be on dry land like most everyone else.  Each year it just feels like it's getting harder and harder.  And as Noah gets older his needs continue to grow while the help continues to shrink.  I don't know what the answer is.  Maybe there isn't one other than to simply keep on keeping on the best I can.   And of course saying a lot of prayers.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.