Sunday, July 29, 2012

July 28, Day 5

Psalm 139:14 says, "I PRAISE you because of the wonderful way you created me.  Everything you do is marvelous! Of this, I have no doubt."

These past few days have been a roller coaster of emotion, fatigue and joy.  Vivi is doing great--she has been a total CHAMP and is kicking massive butt over here at Children's.  We have been beyond blessed with such wonderul nurses, caring doctors and support from friends and family.  Yesterday Viv had an MRI of her abdomin and brain to scan more intensly at her liver.  It was confirmed that she does also have Abernathy Syndrome.  This of course is another bump in the road, but of what severity we don't know and we won't know until she gets a little older.  We are having a conference with the doctors before the end of the work day Monday to discuss our options, as well as devise a plan of care for Vivian.  Everytime I look at her I can't begin to understand or imagine how someone so perfect on the outside could be all jumbled up on the inside. It doesn't make any sense to me.

Needless to say, yesterday was another overwhelming day.  I think I cried majority of it.  Neither Viv or myself had a good night of rest Thursday night.  She could sense something was coming...and every fifteen minutes needed reassurance of some kind.  It's funny how quickly you get into a routine where you jump at any sound, but just as quickly learn to recognize the sound.  5:45 too soon arrived and we were up ready to be prepped for the MRI.  I was dreading the IV, which was silly with the way she reacted.  Vivi literally held out her arm as if to say, "Lay it on me" and took it like a CHAMP!  She didn't flinch or cry, which made it so much easier for me.  Looking back, I am so thankful that we had the MRI because it was the first time the doctors wheeled Viv away from Rod and I.  That moment was the worst moment to date of my life.  There is nothing worse than watching your baby be whisked away from you knowing that you are completely out of control.  Nothing Rod or I could do would have been able to prevent her from anything that was going to happen.  It was awful having my heart sinking to my chest feeling so helpless.  The hours that passed seemed an eternity until she came back and was already breathing over the breathing tubes.  She wanted that out quick!  What a blessing to have such a is definitely making things more liveable.

Everyday we are counting Vivian's Victories.  She is beating the odds that were set before us.  She is not blue, she is breathing on her own, we are able to hold her and love on her all day longand I am able to attempt nursing (which is complete torture for Viv.) .  All of these are huge blessings.  I am learning through the news of her Abernathy Syndrome (which there have only been 400 cases recorded by the way) that every moment is a blessing.  As hard as it is to verbalize, we aren't guarrenteed any moment with Viv.  She is doing awesome, but that could change at any moment.  God is really shaping my heart to overly appreciate the moment we are in and to be overly grateful for the grace we are receiving.  In the heat of emotion, I got so angry at God--why do I need to learn this with my daughter?  Why can't I learn this some other way?  Why can't I learn any of this any other way than what I am?  It just isn't fair.  It sucks.

We have a chaplin that brings us communinon everyday.  Today, the Chaplin read us Psalm 139.  I quoted the verse that spoke so plainly to me at the beginning, "I PRAISE you because of the wonderful way you created me. Everything you do is marvelous! Of this, I have no doubt."  This is exactly what I needed to be reminded of today.  I needed to be reminded that I must PRAISE God for the gift of Vivi just the way she is, heart, liver and all.  She doesn't need to be changed (unless of course God wants it) my heart needs to change to trust fully in the Lord's great love and grace for me and for Viv.  If this means HLHS and Abernathy Syndrome, Lord I PRAISE YOU!

Rod and I went home last night, for one more night of good rest before what we are assuming to be an intense week.  we still don't know when surgery is, and it doesn't look like we will until tomorrow or Tuesday.  A little side note, Tuesday July 31, is the feast of Blesses Solanus Casey...weird.  Next Monday is the Transfiguration...weirder.  Vivi is in good hands.  We had with us a bag of gifts to open from some friends--a gift for Vivi, a gift for her baptism, and a gift for us.  Opening our gift last, I couldn't contain the tears.  I found inside this box a picture for Viv's room with the phrase, "I will praise you, because I am fearfully and wonderfully made".  Sometimes I think if God were any more present, He would be incarnate right in front of me.  Falling asleep last night I was overcome with a great peace that has reassured my heart that I am not alone and that I am not unheard.  It's just the answer to my cries may just be a change of my own heart and an acceptance of Christ's.

1 comment:

  1. Maria and Rod - Cynthia and I are praying for your family. You are in my heart and mind all the time and I am confident God will give you the strength through every moment. I'm really glad to keep in touch with your journey through your blog. Vivi is a precious treasure.