Along with a step back, it's good to remember how far we've come.
August 20, 2012
We received our update from China with a few pictures of a little girl who looked slightly annoyed, perhaps a little confused, and probably downright hot in the very southern part of China.
Here is what I cropped out the last time I posted the picture. I looked and looked at this picture trying to understand.
Meeting your child is beyond words and a bit of a blur. I was looking at pictures the other day and discovered a few that I had glossed over. Maybe I didn't want to think about how painful that day was for her. Oh, this one breaks my heart. Our guide took the picture while the director was handing us our photo book.
I am pretty sure Joy had absolutely no idea what was happening to her.
She tried so very hard to be brave.
A few weeks home and she was at the beginning of acceptance. The fears were subsiding as the trust began to grow.
In October, Joy found her smile, the one that wiggles from the inside out!
After her first heart cath and sometime before her second, I glanced down at her sleeping peacefully next to me and felt that kind of deep and bubbly love only a mother has for her child. Every one of my children has a different "love" story.
November brought a break from reality after we got home from our second heart cath in Boston. I think I let myself believe that Joy's heart condition wasn't that bad. We took her off oxygen during the day and tried to live a more normal life that befitted a very active preschooler. We knew we were in a "wait and see" situation so there didn't seem any point in thinking anything but the best. 
This girl is happy though in spite of the too many blue spells that put her back on oxygen around the clock. Those episodes never slowed her down a bit. She is a trooper about her medicine and as sweet as she is bossy. The little boys don't get away with anything when she is around. She regularly says "I luh you" in a way that warms the heart right down to your toes.
While it was discouraging to have Joy back on oxygen all the time, we will do what we need to in order for her to have the best chance for a longer life. With her tethered to a machine, we all have to pitch in to keep her busy and engaged.
We finally succumbed to the handicap license plate. I put if off for a long time, trying not to visually admit that we had some extra special needs. But tromping through fields at fairgrounds with two heart kids in tow along with Joy on oxygen, now indefinitely, convinced me that it was time.
We head back to the hospital in a few weeks for another surgery with the ENT and Pulmonologist working in conjunction with our cardiologist to try and eliminate/decrease any other factors contributing to Joy's pulmonary hypertension.
Happy New Year!
We love you Joy and couldn't imagine our family without
your sweet smile, your infectious laugh and your precious hugs.
Praying for you and for her as the doctors do their best to help.
ReplyDeleteRaimey and I read this together and she was interested in seeing Joy's "air - nose - too". I recognize with each day how perfectly God loves us by sharing such joy with us in these children, our children, who were gifted to us for a time. I have been taught so many lessons about living in today and for eternity, not worrying about tomorrow. I'm so happy that you get to experience Joy, and that she sees God's love through you. Many prayers and blessings for your family today and onward. ~Angie J.
ReplyDeleteI know it was so awesome to hear her sing the other day and her joy is infectious to everyone she touches. I can't help but smile even bigger as you two walk past after dropping the boys off. whether she knows it or not she knows how to light this world up.
ReplyDeleteAnother beautiful post, my friend. You can see her trust grow just by looking at her eyes in the photos. Beautiful!
ReplyDeleteI can't imagine your family without her.
ReplyDeleteJoy is on my prayer list---every day. May you be incredibly blessed in this new year with health and happiness for all of your children.
ReplyDeleteAmy Root
She's so beautiful! Praying for God's best for your family. She is so blessed to have you!!
ReplyDeleteYou are not alone walking this uncertain path. We just came back from our cardiology appointment with 'no hope' from a human perspective and yet our faith and trust are steadfast in the Lover of our souls. Thank you for being willing to take the risk of Joy and welcoming her into your heart and home.
ReplyDeleteSarah Risley