...BUT God

The process of diagnosis with Obie started when he was 18 months old.

His pediatrician went through a series of questions and determined that we should see a developmental Dr.

We saw the developmental Dr. and started evaluation with the state for services.

We saw the developmental Dr. again, and she started going a different direction, services continued, new "quirks" emerged.

We decided to seek a secondary opinion with Behavioral Health at PCH.  They recommended us for genetics.  Genetics is scheduling out into 2017; insurance, finances, and transitions are all looming.  

We are awaiting an appointment with a new developmental Dr.  

BUT GOD

I don't know if genetics will give any answers, or if it might just lead us into more questions and confusion, but what did it matter - 2017 wasn't going to help us anyway.

BUT GOD

On a whim, I started calling geneticists in Phoenix.  By the way, that list is incredibly small, insurance would be a complication, but I had to try.  

BUT GOD

I called three offices, but avoided PCH because 2017 seems a lifetime away when insurance changes on 10/1.

BUT GOD

I called PCH genetics, I gave my information, our referral was in the system, and so was all of our contact information.  

AND GOD

Patty @ PCH Genetics:

"It's a miracle.  This never happens.  There are two cancellations in the system for August 18."

You guys.  I blubbered.  I cried.  I praised God.  On the phone.  To my new best friend, Patty.

A dear friend texted me and told me she was praying for me to be "shocked and blown away by how quickly it happened."

SHOCKED.  BLOWN AWAY.  Constantly wondering what we do to merit the favor we are shown, and then reminded that we do NOTHING.  We are broken, and sinful, and he loves us anyway.

4 But[a] God, being rich in mercy, because of the great love with which he loved us,5 even when we were dead in our trespasses, made us alive together with Christ—by grace you have been saved— 6 and raised us up with him and seated us with him in the heavenly places in Christ Jesus"

Ephesians 2:4-8English Standard Version (ESV)

*Emphasis mine

    

Baby on the bus

As parents, our goal is to raise healthy, compassionate, and productive members of society.  Kids, who will grow to be adults, and make our world better.  How do we get to that end goal?  Trial and error of course.  Lots of error in our case.

I took a writing class a lifetime ago, and the instructor used a metaphor that the editing process is like sending your baby on the bus.  I didn't have kids then, but I could certainly understand the concept.  Parents send the kids off to school and while some parents may want to protect them and stick up for them and craft only positive experiences, the reality is that kids have to be on their own without our defense, and that process can make them stronger, better.  The idea, of course, was that our papers would be critiqued, but we would need to resist the urge to defend them.  Resist the urge to be *that* parent.

Fast forward to actual parenthood and actual buses, and I have found this concept to be true.  I've discovered I am more than willing to send my children off to experience exciting opportunities and even disappointments.

What I didn't anticipate was having to resist the urge to be *that* parent at home.

If you have more than one kid you know that it can be hard to watch little fists of furry make contact with the bodies of little brothers and sisters.  How you want to lovingly guide kids to be kind, use words and not fists, and to settle disagreements rationally.  But anyone who has spent a fraction of a second with the ages of 0-5 knows that they do the exact OPPOSITE of this.  You also know how your heart can hurt for the one who is in pain, and how it could easily give way to anger towards the one who perpetrated the injury.  My blood can admittedly boil when Booger takes advantage of his size and power at the detriment to Obie or Beasty.

Sticks and stones aside, I didn't expect to be so injured when this conversation took place:

"I don't like Obie."
"Oh, buddy, I don't think you mean that."
"Yes I do.  I don't like him because he is dumb"
"Honey, that's not kind.  Obie is not dumb."
"Yes he is.  I mean, he can't even talk."

I fumbled to conclude this conversation, probably made a billion mistakes, and rushed to find resources to help explain a special needs sibling to a preschooler.

I don't know what injured me more- that I had failed to create an environment of compassion or that I had failed to convey that differences and abilities don't mean less than.  Either way I felt the pangs of failure.

What I realize now is that this was a gift.  This interaction and how I chose to handle it was an opportunity to show grace to one son; it was an opportunity to reflect acceptance and highlight God's image of another son.  It was an opportunity to strengthen Booger's character, widen his outlook on how to value all of God's children, and it was an opportunity to strengthen my character, too.  I didn't lash out like I wanted to.  I didn't stomp off, scream, or berate.  And in its wake I have found words and phrases to help Booger to understand.  To help me understand.

So I keep sending my baby on the bus.  I keep praying for his interactions while he is away.  And I keep praying for his interactions at home.

You're Lucky

The statement, on its own is a beautiful tribute to successes and perhaps even perceived blessings.
"You're Lucky...to be alive."  Thank you, God for sparing our lives.
"You're Lucky...it was just benign." Thank you, God for this close call that turned out to be nothing more than a medical stress.
"You're Lucky...you get all the breaks."  Thank you, God for providing for us over and over again.

So, in all of the phrases in the history of human language, I never expected "You're lucky" to be such a, dare I say, offensive sentiment.

"You're lucky he isn't worse."

You see Obie is unique.  We don't know how unique, and I am sure in the course of my ramblings you will get flavors of his, um, quirks.  And while he isn't officially diagnosed ASD, that is the direction we are headed.  To be clear, he is verbal-ish, he doesn't have a ton of repetitive behaviors, his sensory triggers are pretty 'out there', but don't impact his quality of life too much.  It is a spectrum that is wide and varied, and every child is so truly unique that it is easy to say that his path won't be easy, yet others will walk a more difficult path.

But lucky?  What does that say about the thousands of families facing a mountain of difficulties with increasing severity?  Did they pull the short straw?  Are their kids any less valuable and precious, and image-bearers than mine?

I am lucky that Obie is God's child who I get to help in this world.  I am lucky that he is special and difficult and sooooo charming.  I am lucky that he flashes a smile daily, is growing healthy and strong, and loves his siblings.  I am lucky that he becomes so frustrated that we have to walk him down from tantrums daily.  I am lucky that his needs have become my needs.  I am lucky because through his care, I have grown so much more empathetic of how we are all different.  I am lucky because I can see God in his eyes, and his dimple, and crooked smile.  I am lucky because I can see that God chose me to be his mom.  I am lucky because it is messy being his mom, but in the mess I'm being refined.

I am lucky, but not in the way that "You're lucky he isn't worse" conveys.