Thursday, July 1, 2010

Congratulations Chris and Beth!

So, today is the day that we have waited for for many months with great anticipation. The day that we were to leave for one of Aaron's best friends, Chris' wedding in Detroit. He was one of Aaron's groomsmen, and they have been close friends since college. Chris came and visited us in November and selflessly took down wood paneling and hung dry wall, mudded and sanded in Addison's room. This wedding sounds like so much fun, and I was so looking forward to meeting Chris' fiance, Beth, for the first time. Back when we were going through all of the pregnancy crisis, she sent me this note on Facebook, encouraging us:

deanna and aaron,

just a quick note. i want you to know that you have been very much on my heart and in my prayers, and in my tears. i continue to pray for strength for you both, for God's grace and perspective, for joy in the confusing, painful, and excellently/mercifully designed path He has for you and your precious little girl. you know this, yet i want to reaffirm that she is not "defective." she is PERFECT. i am convinced that she is going to change your lives for Jesus' glory, bring you great joy.... AND give you opportunities to share the treasure of Jesus in otherwise impossible ways.

i really look forward to getting to know you better, and hope chris and i can walk with you in the days ahead when your knees are weak.

praying,
beth

Isn't this note amazing! This note encouraged me so much more than a lot of half hearted attempts of "I'm sure the doctor is wrong" or "I"ll try to keep my child away from you so you don't feel bad looking at my perfect specimen of a child" (yes, I paraphrased this last one, but this actually was said to me by several different people. When you go through tough times, you learn who your real friends are)



Anyway, I SO WANTED TO GO TO THEIR WEDDING to be there for them like they were for us. But, Aaron and I talked about this a lot and were waffling back and forth even as recently as yesterday. Our final conclusion- A 15 hr car ride was too much to ask of Addison at this point. And if we were to fly, how would we transport enough cylinders of oxygen? And, because of all of Addison's extra care- it would be much more difficult away from home. My entire weekend would be spent focusing just on Addison's needs and we would end up just getting in the way. All of this to say- SUPER BUMMED that Aaron set off for Detroit all by himself this morning.

We love you Chris and Beth! I hope to get to meet you soon, Beth! You are an amazing woman and Chris is extremely blessed to have found you! Also- about the gift....The dishes off of your registry were my idea- the scandalous book- that was totally Aaron's idea. You might not want to open our gift in front of grandparents, etc..

Also, I wanted to retell a little story about Chris. A couple of posts ago, I posted about how I almost burnt our house down while I was on bedrest. He was here visiting then. He and Aaron
were about 40 minutes away shooting when I called in a panic. They immediately stopped their shooting practice (they had just started) and came home as fast as possible. When they arrived, the firemen had already been there and pretty much taken care of the problem, but they had put a big fan in the living room to try to get rid of some smoke. This caused so many things to get super dirty in my house. I walked back in the house and the first thing I noticed were the black cobwebs on the ceiling in the LR. I know this sounds silly, but my first thought was "Hmmm, what spiders spin BLACK cobwebs and how did they all get there so fast." LOL. Anyway, the reason for this story. Chris grabbed my dainty swiffer duster (he is a very outdoorsy, rugged man, well over 6 feet tall) and was very carefully dusting all of these black cobwebs away so that I would stop fretting about them. (Beth, you should use him on this- he is a wonderful duster!) I love this image of Chris and the duster...I wish I had taken a picture!

Here is Addison...all dressed up (in new pants from Grandma) with no place to go...)-:


We were working her therapy hard this afternoon and she fell fast asleep in her jumper....oops.

She is working soooo hard to lift that head up!

We sit beside her and cheer her on....Yay Addison!

...working so hard...Hopefully Odette (her PT) will be impressed by the progress.


I have started recording all of the naughty things that Addison does to her nasal cannula. Some of them are funny. Some of them scare me soooo much.
Exhibit A: both nose holes in one nostril. funny.

Exhibit B: pulled complete off her nose and onto her eyes...scary.

4 comments:

  1. She is just so cute and looks so comfy sleeping in her jumper! Good work Addison...those neck muscles are getting stronger by the day!!!!

    It is amazing to truly find out who our real friends are and who bail when times get tough! I'm sure they know you are there with them in spirit and with any luck the next time the opportunity comes up to visit you and Addison will get to make the trip too!

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  2. I love the new pants from Grandma! Especially the pompom trim!! All of the pics are so sweet!! Love them!

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  3. I'm so sorry you and Addison couldn't make it to the wedding. Wow, that note was amazing- brought tears to my eyes.
    I love those pants- so cute :)

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  4. Very wow note. I wish I could say stuff like that - maybe someday if I keep hoping hard enough... Sounds like some special friends you've got there!
    Oh. And.
    I can't believe anyone would even THINK something like their child is perfect and yours isn't. I hope you threw something at them at least. I've found myself just a teeny bit jealous of you at times. I hope this doesn't come out wrong or offensive, but children with Down's stay so sweet and innocent - like I keep on wishing my children would stay.
    OK, and Olivia (my little girl) is GREEN with envy over those totally awesome pants. Her Mama too a little. ;)

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