Wednesday, December 17, 2008

It's just not getting any easier

Today we found out that Esther's surgery is 8 am on Monday.

I also found out that my Uncle Vern is with the Lord - he got there 4 pm yesterday.

I found this photo on my phone - it's a photo of my dear Aunt Marylin holding Esther the week of Thanksgiving.  That was the last time I saw my Uncle Vern - I'm so glad I took the time to stop by that day!

They can't schedule his funeral this weekend, so it will be next week.  That means, most likely, I won't be able to attend. I'm really bummed about this.  He meant a lot to me.

I have also found out that it looks like Jeremy will not be able to come home at all, until at least February, possibly later.  He said tonight that he might not even be deploying to Iraq, but Afganistan.  Almost every time I've told someone that my son is being deployed to Iraq, they say "at least it's not Afganistan".  This was not good news to me.

I keep getting a picture in my mind of a garlic press.  You know, you put a garlic clove in it and press it down to press all the oil out of the garlic.  Not sure how this metaphors works, but I know I don't want to be that garlic clove, but that's kind of how I feel right now.

Tonight there was a code blue just 5 doors down from me.  A code blue means that a child has gone into cardiac arrest.  I sat here stunned thinking that some child might be dying just 30 feet from me.  I even started to cry imagining what those parents would be going through.  I did find out that it was a false alarm, but it's not the first code blue I've heard, and I'm sure it won't be the last.  I hope I never heard a code blue called for Esther's bed, but that could be in our future and that is so hard to even think about.

OK, enough depressing talk.  Today the kids and I had a great day!  The Ronald McDonald House wanted us to make up wish lists for the kids for Christmas, listing things they want and what store to find them in.  So we all got to ride on a Metro bendy bus!  We rode out to Northgate Mall.  None of the little kids have ridden on a bendy bus, so that alone made the day really fun for them!
Here was are on the bus - sorry for the blurry photos, but buses aren't great for taking photos without a flash:

And then the bus driver had a stop for a break (she was ahead of schedule) and offered to take a photo of all of us:

We went to Target, and first of all bought gloves and hats for all the kids and myself, as it was sooooo cold outside, and those items are few and far between in our house, and even fewer came down to Seattle, and none of them were on the kids when we left!

Then we started working out way around the store making the wish lists.  It was a lot of fun!

When we got done, we headed out for the bus stop.

We tried to pass the time by singing songs and playing the alphabet song.  Then we saw our bus - on the other side of the street!  We missed the bus as we were at the wrong bus stop!

So we trecked 1 1/2 block in the freezing wind to the right bus stop, but since we knew it would be nearly 1/2 an hour until the next bus, we made a detour to the Starbucks across the street and we all shared hot cocoa and rice crispy treats ( I had a pepermint mocha twist, yummmm).

Back to the bus stop, and finally the bus came.  This time we got to sit in the middle of the bendy bus - the kids had a blast!  And the driver was in a hurry so it was much like a roller coaster ride - even knocking Dayton off his seat twice!

Then back to Children's where we hung out together with Esther for about an hour, waiting for the shuttle bus to take them back to RMH.  Then things were more quiet around here, and after the volunteer baby holder (this time a daddy) came, I went upstairs for my CPR class.  I was the only one there, and since I've already taken the advanced neonatal resusitation course, she made it more of a refresher and turned the 2 hour course into a 45 minute refresher for me! yeah!

Then back to my room with dinner, and a quiet evening of phone calls.  Now it's time for me to crash, as Esther's asleep for the night.

BTW Esther had a good day - she was more like her "normal" self - alert when awake, and not fussy, but she was very scroogy with her smiles - I think she only let a couple loose all day, bummer!


  1. I know what you mean about the code blue calls. We have had a few of those go off (not for us though) while we have been there in the past. It is heart breaking. I am so happy that you all got to go have some fun though! I think we might have gotten one of the last pairs of mittens when we were at Target!
    Very good to hear Esther had a better day yesterday. Hopefully the smiles will come back. We all have our off days. I am not sure if I already told you this, but I have worked with special need kids for a long time now. One of the first boys I worked with had to have open heart surgery as a baby, and also had Down Syndrom. He was one of the most loveable young men I had even met, and most importantly he was very healthy! I know all of our stories are a little differant, but hopefully that can give you a little something of hope to hold onto.


  2. I just read about you and your daughter on yahoo groups.
    I just wanted to send you a note to tell you that your family is in my prayers.

  3. Here's hoping that Esther's surgery goes ahead today and thinking of you at this difficult time.