Saturday, June 2, 2018

Ella Update

I decided it was time for an update and when I came to write I realized it's been a year since the last update! Crazy!

Ella is doing well! We have been to the cardiologist twice in the last year to have her regular tests and just to keep an eye on her heart. At her last appointment she was placed on a heart monitor that she wore for a week (she took her job of making notes about episodes in her book very seriously)! We discussed some of the obstacles she is facing with her cardiologist and we are looking into some specialists. One of the things about living with a heart condition that is so complex is that it comes with lots of side effects and leads to life long struggles that need to be monitored. Right now, none of these issues are life threatening or really even new, it's just that up until recently we have had to focus on more life or death issues and now we are getting a chance to try to address these other issues.

Ella truly is our miracle. We are just so thankful for her life and for God's mercy in letting us have so much time with her (she will be 8 in August...8!!!!) I'm not sure how that happens so fast! She has really blossomed this last year into a more confident and social girl! She is creative and brave! She loves her special heart because she says she likes being unique! She is getting to do new things all the time, she is a few days out from completing 2nd grade and she is so smart! She is making lots of friends and is getting stronger!

I think the word I'm searching for here to describe my heart is humbled. Humbled by her life, humbled that I have the honor of being her mom, humbled by the way her life has continually thrown us to the feet of our heavenly father. Humbled.

We are so thankful for those of you that continue to remember us in your prayers as we walk this path of unknowns and as Ella bravely continues to fight each day! The balance it takes to raise a child labeled "terminally ill"  is a moving target. I sometimes say it feels like we are living between life and death. Never comfortable to look too far into the future, always trying so hard to savor the here and now, wanting desperately to slow down time, trying to be fully present in the moments that we have together before it's all gone. At the same time we are trying to live full lives, to give HER a full life of love, laughter, new experiences, daring to hope for a long future, not letting the cloud of sorrow taint the time that we do have together... As her doctor once said, the goal is to give her QUALITY of life even if it can't be quantity of life. Those words have rung in my ears. I want her to have the best life we can give her even if we can't have her forever. It's one of the hardest things in the world to let go when you want to hold tight. God has been faithful and we are sure He will always be faithful. She is His daughter too, and He loves her even more than we ever could. Choosing to trust Him to care for her as she becomes more independent has been a challenge but at the same time, it's been a beautiful season. Learning in a new way what it means to surrender in obedience and watching with joy as her soul is flourishing!

Just as I knelt, sobbing, the day I heard that she might have a heart problem, just like the time we got her terminal diagnosis, just like multiple times she crashed, just like the times she "shouldn't" have made it, just like the times we've sent her back behind those double doors over and over and over again, just like the multiple times her heart was stopped and restarted, just like the times we were rushed to the hospital... He was there then and He is here now. When I send her into Sunday school for the first time, when I leave her with someone new, when I let her play in a crowded space, when I let her climb the high rocks, when she is out of breath but wants to keep playing, when she steps out of my sight, when she says "mom I think I'm ready to do this"...He is with her, He sees her, He loves her. Our sweet sunshine girl!