Saturday, November 3, 2012

The road to Philly, pt. 1

Oli enjoying a summer outing.

Asking God for clarity, I have learned, is nearly as dangerous as asking him for patience. Unless you are really, truly, ready to have yourself smacked upside the head with it, well ... don't go there.

Mr. Blandings and I have been asking-- no, begging-- the Lord for a vision for Oli unclouded by our hopes, our dreams, our shortcomings, our thoughts. Lord, just give us clarity. Who is this little man? What do YOU want for him? What are we to do, as his parents, to lead him to where you want him to go?

Yes, we pray these things for all of our kids. But with Oliver, I'll be honest, the path has seem more muddled and less sure than I'd like to admit. What does one teach a little boy just weeks away from his 6th birthday who cannot remember his sibling's names? How does one handle an elementary-aged child who regresses from even the simplest of acts (like remembering how to stab food with a fork) with seemingly no warning? And what on earth do you dream of for your child when so many of the "norms" seem unattainable on the worst of days?

While some seasons of parenting Oli have found us with our eyes set firmly on the positives ("Look! He's using the potty!" "Did you hear that? He said a sentence with four words!"), this past summer was a low spot that left us grasping for straws and leaning heavily on the fact that while we felt completely and utterly unprepared for the job at hand, we knew beyond a shadow of a doubt that God had no such doubts about us and was fully expecting that, with His help, we would find a way to be the parents our special little man needs.

Some days, our prayers for clarity were quiet, hushed whispers as we watched beautiful scenes of blossoming unfold in Oli's life. Other days, they were agonizing cries as we fought hard to maintain patience and perseverance. But always, they were there. We ran like jackrabbits many days, pursuing new tests, specialists, therapists ... anyone who might give us insight into where God wanted us to be. And those days, we felt like we were doing something. Like we might just find the magic pill after all. Like God was going to show up in a white jacket and hand us the answer in the form of a prescription.

And then came the day that God answered. 

It was a gorgeous day, but one that had most certainly not found me at my best as Oli's mom. We had driven to Seattle Children's for yet another appointment, fighting hellacious traffic at an hour when both of us wanted nothing more than to be on the couch reading Curious George books. Oli responded to the stress by kicking me firmly in the forearm as I struggled to get him into his carseat, and then offering me his newest defense mechanism when things are not going his way: "I don't like you!" (I have never had another of my children say this to me, and it cuts me to the quick every time.) Mr. Blandings, at home with the rest of the crew, called me no fewer than three times on the drive to tell me that Seven had flooded her training pants, Atticus had lost his Teaching Textbooks math disk, and Mani seemed to have a fever.

And this was the day God chose to give me clarity?

After the long drive, I found myself shaking the hand of the endocrinologist. After his latest round of neurodevelopmental assessment, Oli had been referred through the matrix of medical offerings at Children's. Audiology for his hearing. Cardiology to double check the valve that had once been wonky. Hematology for more tests than you can shake a stick at. Radiology for diagnostic scans. And endocrinology to perhaps figure out why, once and for all, he is the size of a very small 3 year-old even at almost 6.

The endocrinologist met us in an exam room, a huge file at her side and a computer screen full of graphs regarding my son in her face. She clicked a few times, scrolled, then finally made eye contact.

"So, we met as a board to discuss Oliver's file."

"Oh," was all I could say. A board. Interesting.

"And we've looked at his thyroid testing, and his cognitive scores, and his iron levels, and the bone scans. All the testing you've been doing the past few months."


"And, we, well-- we can't help you. There's just nothing here that indicates anything at all that we can do. Medically, I mean."

As if on cue, Oli crawled into my lap from his spot beside me on the narrow little bench we shared. His feathery weight in my arms kept my head from spinning, but only so much. 

Because there it was, in plain black and white. In angering, full disclosure, I finally had the truth spelled out for me: There is nothing they can do. 




I expected a great many answers from God, but this was not one of them. If Oli had lead in his blood, had low iron, had a genetic something that we could point to and say, "There's the issue," then I would have been relieved. If someone, somewhere would finally (finally!) use a big red marker and scrawl "FASD" on his file, I would feel vindicated.

Instead, I got nothing.

But sometimes, nothing is exactly the clarity you need.


Tara said...

Brought tears. Can't wait to read part 2. That is one thing I have been, oh so, grateful for with my Eon. I love that his is a disability recognized by all and with so much support. I cannot imagine the frustration of the unknown. Your Oli has such a special place in my heart. He just makes me :).

Traci said...

Waiting for part 2. Like Tara Oli makes me smile. I'll never forget our morning of hair raising fun. I pray that God gives you exactly what Oli needs.