Monday, March 16, 2009

pre-rash pics & some misc thoughts

First and foremost, I want to thank you for praying for Ethan's rash on his face and eyes. It's still problematic, but we go to the doctor tomorrow and I'm hopeful she'll have some insight on what we can do differently to treat it. Which also means we are "going to the doctor" aka "it's that time again".... blood draw in the arm. I already know Ethan will hate it and will be miserable throughout the experience. However, I do ask for prayer once again that they will get all the blood they need the FIRST time, that they only have to prick him once, and that the results do not show any odd numbers that would require him to be re-tested the following day. One day of this type of drama is quite enough.... I don't want to him to have to endure it twice because the lab made a mistake or something! Pray also that the doctor has complete wisdom and insight from the Lord on what we can do to 1) make Ethan's eyes better, the skin around his eyes is starting to become raw and cracked and 2) make Ethan's face less dry and irritated. Everything we've tried over the past week and a half hasn't helped.

Thank you for your prayers for us tomorrow (Tuesday). I mean that sincerely. Your prayers continue to be a very big part of our lives. Maybe even more than you know.... and I never, never take the fact that you do pray for us, lightly. In fact, I'm still moved to tears when I think about it.

I thought I'd let you know that Ethan's doing a little better about the eating aversion he's had for sooooo long. He's still a very fussy eater, and still primarily on formula.... but he's getting more and more used to solid foods... and though he only takes "baby steps" (no pun intended) from day to day, I'm encouraged that he's slowly broadening his horizon with different foods.

I also thought I'd share with you that I've been a little "off" lately. Kind of lost in thought. There are many explanations for it, but I don't have exactly the handle on things in order to fully express what I mean right now.... but for a long time I've been at a standstill... with most every aspect of my life... taking care of all the details of Ethan's recovery... and I'm craving the opportunity to move forward. For me, Adam and Ethan to move forward. Into what, I'm not sure. But I need to know... to really see... that there's more to this journey we've been on.... to see beauty for the ashes. It's true that Ethan has been doing so very well, and my heart is over-joyed constantly by that alone. But truth be told, we're only weeks away from the one year anniversary of when he was diagnosed, and, it's been a very long road - full of details that no parent should ever have to do or endure. And there's been much that we as a family have had to sacrifice. And though I do believe it all necessary for God's will, I'm truly ready (in desperate need) for a change in this season of our lives.

Choppy waters calmed.

Doors opened.

To gain back what's been given up.

Many times I don't have words to describe what I'm asking the Lord for... in part because I feel as though he's given me Ethan's life and I should be grateful for that alone and not bother to ask for anything else. But deep down, I know better than that. God is more than the box we put Him in in our minds. Mercy un-ending. Yes, Ethan is alive today. And what a precious gift that is to have every single day. But, it's still been a hard road to travel down.... your baby having cancer.... even with a full recovery (which we are still believing in), there's so much that's lost. Especially being a first time parent and the hopes/dreams that go with it all. I'm just hoping for a little bit of all that back. I've been content (sometimes more than others) to walk this road hopefully not too many ever have to travel - but unfortunately I know that too many do - and in all honestly, sometimes I just want to sit down. To stop walking. And enjoy life again.

Well, I think my keyboard is sufficiently wet at this point, so I'll stop here. Thank you for listening.... it really helps me to have you here.

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Oh... before I go.... here's our little hero a couple of weeks ago. Just chillin' around the house.


i couldn't resist taking this one...
he was getting in trouble & this was his reaction



adam bought ethan his first UCONN hat... like father, like son
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I waited patiently for the LORD;
and He inclined to me, and heard my cry.
He also brought me up out of a horrible pit,
Out of the miry clay,
and set my feet upon a rock,
and established my steps.
Psalm 40:1-2

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2 comments:

littleleaps said...

Amen, sister!

Mama Kat said...

Poor baby! I can only imagine how my kids would react to that kind of intrusive blood drawing...praying hard for your little guy!!