Dependent

Finn is four weeks old today.

How time plays tricks. The final days I waited for him to emerge — a week past his due date — those days stretched forever. And now we have blown through four weeks. Weeks that have been filled with joy, fear, sadness, hope, gratitude, laughter… and a whole lot of Jesus. I am pretty sure this is what God calls the “fullness of life” — the heights and the depths all mingled together in a rich and beautiful mess of a story with Him as the only centerpiece that makes sense of it all.

Monday we went to Children’s Hospital in Seattle; it truly is an incredible place and we are so fortunate to live where we live, with the cutting edge of research and the most knowledgable specialists minutes from our home.

We had been waiting for this appointment for weeks, anticipating a diagnosis for our little guy, more insight as to his colorful appearance, and {hopefully!} the ruling out of what the doctor called “nasty” syndromes connected to the same gene mutation that caused the port-wine stains decorating Finn’s little body.

After offloading our three older boys to various loved ones {thank you!} we checked in at Children’s. I was not anxious or fearful; in fact I was surprised at the peace and ease that accompanied Marshall and I despite a pretty hectic morning getting out the door.

It didn’t hurt that Finn decided to crack his first smile as we were waiting.

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We initially met with genetic counselors, who mapped with great detail our families’ health history. The gene in question is not at all hereditary, but I trust that with the newness of it all, {the particular gene affecting Finn was only identified in 2012} they take extensive notes for research purposes.

We then welcomed in the neuro-genetecist, who poked and prodded and tossed our little Finn, noting every mark on his body and looking for a host of other indicators our untrained eyes could not have picked up on.

After scouring him for some time, he began to inform us of all that could be at play – three particular syndromes connected to the same gene mutation all having to do with accelerated growth of cells. What we see in Finn superficially is an overdevelopment of the vascular system, which if it affects the brain could indicate the development of aggressive seizures that are very difficult to manage by medication, and possible sight loss. If affecting limbs, one could have significant overgrowth {he noted a six month old he observed with a foot larger than the size of a grown man’s!}. It was all more fascinating to me than terrifying, as I trust the Lord is guarding my heart every step of the way to not place our story in any of these extreme categories unless we have reason to do so.

We thought next he would assure us that none of said syndromes were the case for us, that all he observed was indeed vascular and superficial. But he didn’t.

He told us that even though Finn’s MRI came back totally free of abnormalities {a great sign that we were in the clear} that an MRI at 2 days of age is capturing a very young brain, and at this point we can’t completely rule anything out. He told us that Finn looks otherwise healthy, and that we should continue to closely monitor his growth, noting any asymmetrical development, rapid increase in head circumference, or seizures {which in infants seem to be rather difficult to pick up on as they might just stare for some time – which Finn seems to do whenever a bright light is overhead!}. Any of these things would merit a follow up MRI which without indicators would be unnecessary.

We were directed to set up an appointment with the dermatologist who specializes in vascular birthmarks, and she would then educate us as to treatment options. It was then that we learned the most amazing thing: with the gene path only being identified in 2012, the research has been furious, and the first time this gene will be available to be clinically tested  – ever – is in January. We are literally on the cutting edge of research. In addition, the most recent treatments include topical ointments that specifically target the gene path that causes the overgrowth, thus slowing it down, and these too are brand new.

Wow. If this had been our first child, just eight years ago, we would have had none of this knowledge available.

Gratitude.  

As we ventured into the parking lot two and a half hours after we arrived, with a lot more information but no more assurance of Finn’s diagnosis, I began to talk to the Lord. “What are you teaching me? What can I glean from this, Jesus?”

And it was so clear.

Dependence.

So often we come to God asking for a clear “diagnosis”. It might be regarding a life stage: “Where will I go to college?” “Should I date him?”  “Do I break up with her?” “Who will I marry?” “Is  this the right job?” “Where should we move?” “How do I parent this child?” …or perhaps it is a literal diagnosis: “Do I have cancer?” “Is this depression?” “Will I be healed?” “When will I be free of this addiction?”

We want answers. We want timelines. So we can know. So we can go on our way.

But God wants us. 

I think that if we knew the answers, if we knew what God knows — the end from the beginning — we wouldn’t need Him anymore. We wouldn’t run to Him and ask things of Him and celebrate with Him and let Him carry us when we are tired of asking, and comfort us when the answers are not what we hoped for.

God desires relationship. He desires dependence. Because He loves us. And wants to give us the best. The fullness of life. And that is found nowhere else but near His heart.

The greatest lie is in thinking  that an answer, a “diagnosis”, a direction, will give us peace. Only the Prince of Peace can dole out what only He possesses. It is like thinking we can get strawberries from a lemon tree. Our school, our job, our significant other, a clean bill of health, a big paycheck… none of these things offer what only God can provide.

And as we will go back to the doctor in December, and January and February, so will Marshall and I go back to the Lord today and tomorrow and the next day…

And I trust that the peace that covered us as we walked into the hospital will cover us every day that we press into the heart of the Lord.

Determined dependence… on the One who never fails us. Not with the diagnosis we want, but with the love and presence we crave.

Surrendered hearts… to the One who knows everything. And will only bring us into his knowledge as He sees fit, in the timing he determines, so as to keep us in step with Him.

Joyful submission… to the One who died for us. To the One who is a good Father with a heart for his kids. Who will give us gifts beyond our imagination, who assures us that this world is full of trouble, but to not fear because HE has overcome it. 

This is the fullness of life.

Are you living it?

 

 

 

 


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