Dylan is Four

Dylan had his fourth birthday.

For many families this would be a great celebration.  For us, it is mixed.
The progress is excruciatingly slow and some days nonexistant.  They tell us that there is a "window of opportunity" to reach these kids before they age of five when most of the brain growth and neurological pathways have already been established.  So a fourth birthday to us just means the clock is ticking and the deadline is looming ever closer.

I am discouraged.  Exhausted.  And I am pissed off.

At myself.  At God.  At everyone.  This is a struggle for a strong person.  Someone with money and strength and unwaivering determination.  Someone with a super cape who can catch a bullet in her teeth. 

Here's the thing.  I believe in God, not because my mom told me to.  I believe because I diligently sought out answers myself.  Read books on Darwinism, Buddhism, Hinduism, Atheism.  I know what is true.  Because I sought it out.  Truly.

So now I sit here knowing...not believing, but knowing who God is.  That before the foundation of the world, He knew me.  Knew every mistake I'd ever make.  Knew my strengths, weaknesses.  Knew every person I would ever associate with.  He knew Dylan and my other four kids too.  And He chose to allow this for me.  Me.  Not my smarter neighbor or my wealthy friend.  Not my successful coworker or my acquaintance with a huge supportive extended family.  Me.

And if God is the God of the Bible, then I am suppose to be the best person for this job.  I am suppose to be thoroughly "equipped" to handle this.  Not just handle it, but rock it.  I am suppose to have (or be able to get) the tools I need to accomplish this task.  So where the frick are they?

Can I just be honest.  I suck at this.  Suck.
Think about the word suck.  What it means to suck.  And all of the possible ways a person can suck.  That'd be me.
There must be some mistake here, God.

I read about a study conducted by the Lovaas Institute that says 10 hours per week of ABA therapy produces the same outcomes as no therapy at all.  That's what we've been busting our butts to be able to afford for him.  According to the experts, he needs 40-60 hours.  According to the experts, what we're doing isn't worth a pile of crap baking in the sun.

I want to quit.  Give up.  Call it a day.

I am tired.

Since my job is online, I actually have a pressure sore on my butt from sitting in this computer chair.  You know, the kind sick people get from laying in a hospital bed too long.  I work an obscene amount of hours in order to try and increase my earnings.  In the meantime, my husband takes side work on the weekends.  Tonight he is in Austin.  After working five 10 hour days, he took a side job to pay for the therapy that isn't friggin' working.  He is staying overnight and will finish it tomorrow.  And I miss him.

All of this would be worth it if he was able to put two or three words together.  If he was going on the potty.  If he was showing signs of recovery.  If he wasn't eating his own poop at naptime.

If there was the faintest sign of hope.

I think about Psalm 127:2
In vain you rise early
and stay up late,
toiling for food to eat—
for he grants sleep to those he loves.

He grants sleep to those he loves.
I don't understand.

Here's the thing. We're not giving up on Dylan.  We're not gonna quit trying.  And we're not asking a single person for a handout. We're working for all of this. Whatever the cutting edge research says to do, we're doing it.  With four other kids and a million miles away from our support system.  We.  Are.  Doing.  It.   So what more does God want from us? We aren't praying for a bigger house or a nice vacation.  All we want is our son to be whole. To have a shot at a future.

He can't look down on us and say we aren't trying. So why isn't he answering our prayers?