Family.

I do not know where we would be without family.

Family is the glue that holds the pieces of you together when you feel like things might fall apart, the stuff that keeps you upright when you feel kinda like the scarecrow on his wobbly legs from Wizard of Oz, that invisible force that somehow pulls you back and pushes you forward at the same time.

I thank God for our amazing family tonite.  We have been fed, pampered, relaxed and cared for and allowed to just BE. In stark contrast to the ball of nervous energy I was prior to actually getting up here, I find myself able to  laugh at the craziness of the cousins all playing wildly together, yell at the TV when the judges make bad calls about the contestants on America’s Got Talent, sit and enjoy a nice cold coke and a bowl of ice cream while reminiscing about old family memories – and decidedly NOT concentrate on anything medical.

Tomorrow will be here soon enough, waiting with all its unknown glory. We may get answers, and we may not. I know that either way, we HAD to come here. This was/is the next step for our baby girl. And then the day after that will be its own step. And we’ll just keep putting one foot in front of the other, keep moving forward, keep on keepin’ on.

She looks good today again. A little crackly in her lungs again so i don’t know what that’s about – hopefully a lot more of nothin’!

So while i still don’t have a LOT of faith in this appointment tomorrow, I know we have to have some hope.  We always keep hoping. Maybe this doctor tomorrow will have THE BIG ANSWER, and maybe he’ll just provide another small piece. Maybe they’ll want her back to run lots of tests, and maybe they’ll just have us space out our visits over the next few months. i don’t know why i am more worked up over tomorrow’s appointment than Thursday’s. I guess because we have been so disappointed with previous GI’s we’ve seen, and by this point i think even Kealey could tell you we’re dealing with far more than a GI issue. but maybe it’s because, somewhere deep inside, i really do have a HUGE hope that they’ll fix her tomorrow. That we’ll walk in those doors with a mystery baby, and walk back out them with a prescription in hand guaranteed to just FIX everything within 24-48 hours. I think it’s because that little dream is so much easier to handle than the other one I have, where they tell me that her GI system is still not working right, and we still don’t have any idea why or what they can do to fix it before it shuts all the way down. But hopefully they’ll land somewhere nicely in the middle. Yes there are a few more things we can try, a few more tests we can run, and in the meantime, here’s how we can stabilize her.

This morning I was working with two different nurses to try to get the remaining parts of her medical records that I don’t have, and as they were coming in on the fax, it was surreal to see some of what I have been told verbally written there in black and white on the reports. “Chest x-rays show persistent chronic lung damage.” “Kidneys show signs of hydronephrosis." “Possible subclavian arterial defects”.  I knew these things. i spout them back to other doctors as part of her medical history, but seeing them just hit me. Grounded me a little to the fact that there IS something going on that I can’t quit fighting for her for. I see why Dr. A was so insistent with us last week that we get her help NOW, that we don’t have time to sit back and wait. It’s not so much because she’s doing bad or looks bad RIGHT NOW, but because we have no guarantee that the next stomach bug or viral cold won’t be the time that her kidneys REALLY have trouble bouncing back from, or that her lungs have a harder time clearing from. She is living not in a state of health right now as much as disease-controlled. Whatever her “disease” is, its controlled. For now.

And THAT is why we are here. To identify the disease and pull it farther away from the fine line that she lives on and pull it back towards a level of HEALTH.

so I guess I should go to bed. I don’t even have wireless access right now, as I am writing this. It will be posted tomorrow while we meet with the doctors and nurses holding Kendall’s fate in their hands. And yet we know that truly, it is in much Bigger Hands than theirs. So as our family gathered tonite and prayed over Kendall, i began to feel the peace that I so desperately needed. I know so many of you are praying for us and thinking of us as well, and I cannot tell you how much that means. We can feel it all and are so very blessed to know each and every one of you.

the other nite I signed off with the words “I hope”, and a friend emailed me to say simply, “me too”. It brought me to tears with its simplicity and its touchingness, the raw emotion conveyed with such simple truth. Can I ask you all a favor? If you are praying for and thinking of us today, will you please take three seconds to leave a comment and tell us “me too”

Here’s to hope…

T