Thursday, July 25, 2013

Chaia and the jock strap

First, Chaia and Shaina are still in the hospital. There is at least some talk about them coming home Friday. Chaia will have her 8th treatment today of this experimental gig she is on.

The good? For the first time in over a year, Chaia's calcium numbers on her labs have normalized, meaning they are closer to the average numbers expected in people than they have been in a long time. It seems like there could be a number of contributing factors, but the hope is that this is the first indicator toward calcium levels stabilizing or even reversing in her arteries. Won't know much more on that until they do another CT scan.

The bad? This stuff is making Chaia really sick during the infusion. Heaving, vomiting, discomfort. The doctors have been messing with a cocktail of anti-nausea meds to try and curb the violent illness stuff, but there hasn't been much success to date.

The ugly? Me apart from my girls for the better part of two weeks.

If and when we do get out, apparently the pharmacy will have to make the drug daily because the shelf life is 24 hours. So there are all sorts of beautifully complicated things to this.

So we continue on a road that isn't ideal. Chaia going through the ringer to try and reverse where this thing is heading. But I talked to Shaina yesterday and she said that the combination cocktail of ativan, benadryl and some other drug that would knock most humans out had no effect on Chaia. An hour after she was given the cocktail, she was riding in her stroller waving and telling all the nurses and doctors "Hi".

Pray for clarity on whether this med is doing what it needs to in terms of removing calcium. Pray that if Chaia is to continue on this treatment, that she would build a tolerance in her body to not get so sick.

So that's where we stand medically.

Where are we emotionally? spiritually? physically?

We are weary.

But we are supported. Seriously you guys have been amazing.

People selling bags and 31 merchandise to benefit Chaia. Cards arriving at the house daily from all over the country with words of encouragement and hope and prayer. Gift cards and cash coming from people we don't know and places we've never heard of. Timely texts and facebook messages and emails. People giving their bedroom to Shaina for a night just to get her out of the hospital vacuum. People coming to take Shaina to dinner and to pray healing and cleansing over her.

I used to whine in my self-loathing about how we don't deserve this. We don't deserve a kiddo who has so much working against her. We don't deserve suffering and heartache and pain and disappointment and weariness. I can think of a bunch of people I've met who deserve this more than I do.

But in the midst of this chaos (that is actually how some smartphones autocorrect Chaia's name!), God made you all our jock strap.

Now I find myself saying it again. We don't deserve this. But now I mean it in a totally different way. We don't deserve the Church coming around us literally from California to Wisconsin to Georgia to the Carolinas. From Cleveland to Wadsworth to Columbus. I hear the indictment of the Church almost daily. Anti-this. Opposed -to-that. Failing. Dying. Corrupt. Boring. Irrelevant. I've even used some of those indictments in my past.

But like a healthy body does, the Church has rushed to her wounded parts. We have been so incredibly supported. Shaina's phone is blowing up with text messages of the point that she has maxed out her texts for the month (so don't text anymore! haha).

We don't deserve this. So many who are in the the hospital along side us do not have nearly the support we have. Some of the kiddos have not even had parents who can show up to walk through the hardship with their little ones. It's heart breaking.

And it makes me fill up with gratitude.

I want you to know how much I love the Church, the bride of Christ. Not just C3...But the collective big "C" Church. Chaia is here because hundreds if not thousands of people in the Church have knelt on her behalf. Pleading for healing. Crying out for rescue. (Remembered this little video from Chaia's hundred day stay in Cleveland almost two years ago.)

Praying For Chaia from Mustard Revolution on Vimeo.

You may be cynical about the Church. Suspicious. Frustrated. And sometimes all of those are warranted. I'm the first to admit it. But when the bride of Christ exchanges the bib for an apron? There is nothing more beautiful. When the cause of Christ compels her? There is nothing more life-giving. When She grabs a towel and serves the world? Change can't help but follow.

Try church again. Don't give up on her. Don't write her off.

We don't deserve any of this, and yet day after day the support, the prayers, the thoughtfulness, continue to spur us on.

Chaia wins when we kneel.

And you want to know a secret?

You do too.


Mama Karen said...

My life is enhanced because you are a part of it!!! Praising God for your little munchkin!!! Thank you God for good calcium readings! Thank you Jesus for giving doctors the knowledge to treat Chaia's side effects. We trust God to help her body adapt to the meds and not have a reaction. He is able!!! You will NEVER walk alone in this season!!! As long as we your guardian prayer angels go before the throne interceding on your behalf with Jesus beside us. You will always win!!! Chaia wins!!! Love you all!!!

Amy Starkey said...

We continue to pray for all of you! I know you guys have said it before but you sure named her correctly...even when things seem grim Chaia seems like a life full of joy, spreading it to all who come into her presence. She is amazing and so are you guys. Praying for healing, for strength, for peace and for preserverence!

Anonymous said...

We are all still kneeling for Chaia and family.