Wednesday, September 25, 2013


What a week so far.

Teams from Cardiology, Genetics, Physical Therapy, Physiatry, Endocrine, Gastro-Intestinal, Opthalmology, nutrition, occupational therapy.

Echos, EKGs, Ultrasounds, X-rays, blood draws, urinalysis.

There is so much. One doctor commented that reading the chart and seeing the myriad of problems Chaia had, she could not believe it when she came in the room for the first time and saw a two year old scooting from one end of a window sill to the other, chattering away.

With so many systems compromised, it is overwhelming.

Her heart has 25% that doesn't function.

She pukes substantially every something is wrong with her GI.

Consequently she isn't getting enough calories.

Consequently she hasn't grown since around the 10 or 11 month mark. A 15 month plateau.

Consequently there was pressure on her brain and swelling on her fontanel, in part because the fontanel can't close.

The calcifications which caused the heart attack were treated with a drug that may or may not have given her a nasty bone disease or possibly rickets.

It may not be the drug. It might be the disease. It might be the diuretics which could be taking minerals off board along with extra fluids.

If she doesn't grow and thrive, her brain development is likely to be compromised.

So do you tackle the calorie issue? How so if there is perpetual vomiting?

Target the vomiting? Well is that caused by the NG Tube? The etidronate which has been known to initiate reflux? The 10 or 11 other meds she is on currently, the majority of which cause nausea and vomiting?

Change up the meds and does that compromise the heart?

Then the genetics...the disease she has, according to the doctors at NIH, only about 70 documented cases are found ever worldwide. Of those 70 only a half dozen or so have pxe mutation and are showing symptoms of GACI. Chaia is the first the NIH has studied.

Yet the other part of the story? Virtually every team comes in, sees her eyelashes, has their heart melted when Chaia stops playing, grabs their hand and their stethoscope and lets them listen to her heart. She is so perfectly still and quiet. Then as they leave the room she says "bye" and they can't help but leave the room smiling.

It is really early mornings...pretty late nights...very few naps.

More questions than answers. More confusion than clarity.

We are weary.

But I was thinking about this today. We can't understand or experience God as a provider until we've been crushed with the reality of our desperate need. Provision doesn't come to the self-made. It comes to the desperate. Most of us in the US don't know much about trust and need because security and safety have become our gods. Provision doesn't come because risk doesn't exist.

The danger of weariness is that it can cause us to quit or surrender just before the breakthrough.

We are teetering...between weariness and desperation. There's a difference. Weariness says "we're through". Desperation says "we're through without you."

Weariness says our circumstances trump our God. Desperation asks our God to trump our circumstances.

Weariness says the race cannot be run. Desperation says help me finish strong.

It's why the NT writers encourage us and say things like "let us not grow weary in doing good". Because weariness steals the joy of the soul.

But desperation? It is fuel to joy's fire.

If we're not desperate for God to move in our life, it is because somewhere we settled for some small 'g' way of life that doesn't lead us to be change(d).

It's obvious where we need to be...just need you to pray our way there.

Chaia wins when we kneel. But so do you.

And I am becoming increasingly convinced that this is less about her and more about me and you.


Change starts here.


Anonymous said...

If desperation is joy's fuel, then I have one amazing bonfire going! God is here, as God is there with you, and He is sensing and responding to our desperation. The dross in my raw, aching heart is being consumed by the flames, leaving behind precious, pure gold as I wait before Him. Every last nugget of gold, I lay at His feet as an offering of adoration and praise. God is being glorified through little Chaia, through you, through Shaina. May God have His perfect way with all of us, as we are refined by His fire. Continuing to pray without ceasing...

Anonymous said...

Be still and know that I am God!