Wednesday, April 20, 2011

Dr. Update

Everyday I have a little boy who reminds me that there is a superhero who will save the day. To Braden, he is batman, superman, spiderman. But the other day I asked him who fights the real bad guy. Braden said, "I don't know mommy, who?"

'God, Braden. God fights the bad guy everyday.'

And he understood.

I am thankful for a God who fights the bad guy...

and I can rest in that in my moments of sadness, confusion and desperation.

Our appointment went well today but I have no new updates. Mabel's blood work has not been sent back yet. Dr. K expects it to take 2-3 more weeks. She said she will call us either way. So it is more waiting.

And I am learning in the wait.

And praising in the wait.

The wait is hard. The wait is frustrating. The wait is full of unknowns. And as it stands, we are still in the land of the undiagnosed. But we will make a bed here and rest in it until we embark into the 'known.'

Today's appointment did come with the confirmation that Mabel's eyes are still the major concern. We are going to try to have the next big test done in Chicago at the same time that we meet with the geneticist in late June.

We updated her chart with a few new things that we noticed, but all in all not a whole lot has changed. Which is a good thing in alot of ways.

As I was walking out, I teared up and said to Dr. K that I'm just having a hard time not knowing what is happening with Mabel or why. She nodded, knowingly, and said she understands that but wants me to know they're doing all they can to figure it out. She also said that although she would love to tell me that they find a diagnosis for each case and every child, it just isn't always so. And I left with the realization that I am in the 30-40% of people who have no diagnosis as of now. It's so very isolating and scary for me because for me, knowledge is power.

Power to act.

Power to care for her the best I can.

Power to feel like I'm doing enough.

But in the meantime, I'm going to just keep doing what I'm doing and trust that it is the best I have and that it is enough.

I also have to keep in mind that our neurologist and her expertise will only take us so far. At some point, the geneticist will have to step in and fill in the blanks for us. But for now, I am still trusting in the Lord's timing and trusting that this is where we are supposed to be right now. I am thankful for a God who is in the details.

So that's it.

Thanks for all the emails, messages, and texts of support and love today. I love you all too and although I don't always have the words to adequately thank you, I hope you know how I feel. You're pulling me through. I feel it everyday.