Monday, July 25, 2016

Ah, Motherhood: A Lesson in Gratitude

My heart is heavy this morning as I struggle to practice gratitude.  I have been internally weighing whether or not I should go back to work lately. (After the drug trial is over, of course.)  The reality is, however, that I can’t.  I have 2 college degrees, and short of finding something I can do at home (which is proving to be impossible), I simply cannot re-enter the workforce

The reason?  Kara. There isn’t a daycare that services her school that will take her due to her disabilities.  At-home care proved to be a very expensive tax nightmare last year.  This world, with all the advancements they’ve made in the area of disabilities, is seriously lacking in the child-care sector.   There is one daycare in the entire metroplex equipped to care for kids with special needs, and it’s nowhere near close to our house or Kara’s school.  In 2014, the American Community Survey reported an estimated 195,817 children in Oklahoma County alone. Of that, 5% were reported to have a disability.  I’ll save you the trouble of getting out a calculator, and do the math for you.  That’s almost 9,800 children with a disability, IN OKLAHOMA COUNTY ALONE.  And 1 child care center geared specifically towards children with special needs.  We have a problem here.

But alas, the city caters to the typical, the privileged, and to those receiving welfare.  Our family does not fall into any of these categories.  My knowledge of all the resources available to me is exhausted.  Yet my search continues.  I learned from friends I can move her to a different school district.  Or maybe I just hold tight.  After all, we have scoliosis surgery coming up, plus another year-long Trofinetide trial after this phase is over.

I am not trying to come across as seeking pity, or as whiny (well, maybe I’m whining a little).  I am not one of those people who do well caged in, with parameters put on me outside of my control.  You tell me I can’t do something, I’m going to find a way to do it.  But when it comes to my kids, “adequate” or “that’ll do” isn’t good enough.  Especially for Kara.  She already had to endure that last year in school, I can’t have her care that way, too. 

So I sit here, struggling to be grateful that God put me in control of her well-being.  That I get to be the front-running caregiver for her and my twins (which in and of itself is another challenge).  That I don’t need to work (but the spoiled crazy person within me wants to).  That I can sit here and type this while my twins go shopping in the fridge and end up eating slider buns because their mother is whining writing a blog instead of feeding them lunch. 

All will be revealed one day.  God is qualifying me for something great.  All I need to do is be obedient, and be still. 


And pour myself another cup of coffee.


1 comment:

  1. very brave mom.pray for u. i have a relative whose daughter is recently diagnosed to be suffering from rett. how is kara? is she going into the phase 3 trial of trofinetide? pray for kara and yr family

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