Thursday, December 15, 2011

witnessing a miracle

Monday, December 12, 2011






Sunday, December 18, 2011

So, I've been taking a few pictures throughout this "journey".  An outsider would probably think it's pretty crazy, if not disturbing, that I insist on photographing every detail.  Why in the world would I want to share or remember images of my daughter at (please, God!) the most terrifying and painful time of her life?  
Each picture gives more hope.  Would I be taking pictures if I wasn't convinced that Adeline will fully recover?  Probably not. There were plenty of times that I didn't pick up the camera - saying good bye before the surgery, the vitals, the blood draws and cries of pain, etc.   There are so many stories of childhood illness and suffering that do not have a happy ending for those left behind.  Adeline's story is of strength, hope, faith, medical miracles, and Divine Mercy.

She is like a perfect package revealing itself little by little, day by day.  I feel this is a gift - it's a gift to be able to capture a miracle unveiling itself.  These are events that tell a story of what is possible with loving parents, a strong little girl, brilliant, talented surgeons, a loving and supportive family and community, and a omnipotent, loving, merciful, miraculous God.  I am recording a celebration of life.   

I have gained so much in this past year and a half.  My relationship with God is more intimate.  I have been granted the peace that passes understanding when I needed it the most.  I can't understand all that life has handed us, and I couldn't fix it or even cope with it all on my own.  But He gave us the tools and resources and people that we needed to bring it all together and correct the problem. We I have tangible proof that He is good.

What a week!  I had the same constant anxiety that I felt when I was on maternity leave with Nile.  A lump in my stomach and over-reaction to every move or sound she made.  I even forgot to eat at times... I NEVER forget to eat!!!  But she was WONDERFUL!  She just needed to be home.  She rediscovered and studied every toy in the house using her barely open right eye.  She ran from room to room, saying "Hi" to everyone and everything each time.  She was beyond happy.  And she was exhausted.  I have to admit I was selfishly terrified that she would never sleep soundly or on her own again.  My mom spent Sunday night with us expecting to help throughout the night.  But Aaron laid Adeline in her crib late that night and she didn't make a peep for nine straight hours!!!  I would have been going crazy with worry if we didn't have the video monitor.  I kept checking the monitor throughout the night, but my mom admitted she opened her door and went in her room at least three times.  And, for the most part, she continues to love to sleep!!  Thank the Lord!
She had a few days with episodes of pain - it's unrealistic to think she wouldn't. There is nothing worse than the sound of a child crying because of discomfort.  And her pain medication dose is the same as it was last year - I guess they figured it was enough.  But she has kept herself so busy and so distracted it barely slows her down!   She has been doing so well these past few days that I have only had to give her tylenol to keep her fever down.  She had her last dose of antibiotic tonight.  I would still want to be in a comatose state if it was me!

Grandma Hot Dog has been helping out, providing extra love and attention this weekend. Adeline and Nile will both miss her sooo much when she leaves.  And Aaron and I will too...she has this amazing ability to relieve stress and gingerly smooth the way.  But I'm sure she will be exhausted by the time she gets home!
Jo Jo stopped by to make up for all of the cuddles and kisses she has missed the past couple weeks.  Adeline wrapped her arms around Jo Jo's neck and put her head on her chest, just like she had been doing every day for the past year and a half that Jo Jo has taken care of her.  They were both in need of a  "rockabye" fix.

It is going to be very hard to go back to work tomorrow.  I will miss everything about her.  I will miss watching Dora and hearing Adeline answer "No" to every question Dora asks.  
Dora: "Do you want to go on an adventure with me? 
Adeline: "NO!"
Dora: "Do you see the baby jaguar?"
Adeline: "NO!"
Dora "Can you say rapido?"
Adeline: "NO!"
Good thing Dora has a high self-esteem and just keeps on going.
And I'll miss snuggling, and dancing (I have never met a child that loves to dance soooo much!), and singing, and saying the ABC's over and over, and getting kisses, and playing.  UGH!  This is going to be hard!
But Aaron will take good care of her this week.  And my mom will spoil her rotten next week.

I guess that's part of the gift - life is moving on.

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