Tuesday, August 23, 2016

The Latest Good & Bad

School is back in session for Naya, and I will be back in school also in a week. It's the last semester to earn my bachelor's as I progress towards working in the field of speech therapy, so that is exciting!!

Today I was pleased to realize that over the summer I have become a little more capable of "living in the moments" of mom-life.  As summer was about to begin this year I worried that my fuse might not be long enough.  I live in such a strange harmony of utter thankfulness for each moment I have with Naya, as well as the rejoicing in any flash of me-time that I'm able to secure.  The summer's daily run-around was still ridiculous by my old standards, and at the end of each day I still had to breathe a sigh of relief, but with God's help it's actually been pretty enjoyable! Despite the circumstances I know I am so blessed to have all this time to grow closer to her.

I wanted to share how Naya has been doing physically. While she still has a long way to go to be able to walk or write on her own, she has come SO far from when we were discharged from the hospital two years ago. Cognitively she is doing REALLY well... she still experience some learning challenges, but works hard to keep up with her 2nd grade classmates.

Almost 2 months ago now Naya had heart surgery.  Her heart function had decreased significantly since her heart surgery in January, so pace maker wires were moved around in hopes of making the ventricle pump blood more efficiently.  It was expected that it could take weeks to see if this surgery worked. We were hoping at 6 weeks to see some significant improvement, but her recent echocardiogram showed none-to-slight improvement, which was very disappointing.  Her cardiologist has not given up hope that it could still improve.  If it doesn't, the medical team still has some ideas to try, but it seems there are not a lot of options between here and heart transplant.  People with Naya's type of heart disease know that a transplant is where they are headed eventually, but the hope is to put it off until their 20's, or even 30's. Having to get a transplant as a young child is scary.  Being eligible for a heart and finding one can be difficult.  I know of children that haven't made it through their transplants because of organ rejection.  I know that all the post-transplant drugs one has to take can take a toll on the rest of your body.  And I know that new heart usually only has a life of up to 20 years if all goes great.  So if she needs a heart one day and gets one, I would be eternally grateful for another child's sacrifice and gift.  But it is not my hope for Naya.

While this is all disturbing, I can thankfully say that most of the time I'm still living in peace.  Back when I discovered the severity of Naya's condition, I believe God gave me this verse for her, which I go back to for comfort. I believe God has big plans for her life.
"I will not die but live, and will proclaim what the LORD has done."  Psalm 118:17
And I'm forever thankful for my family & friends, and the community of supportive friends online that Naya & I have.  Knowing you all are praying for or thinking of her gives me peace as well.


  1. Thanks for all that! Your sharing of Naya's battles and victories, regardless of how small warm my heart. She is such a beautiful young lady and such a brave, smiling warrior. Keeping you both in my heart and prayers. The two of you have been sent on this journey for a reason - even if it is only to bring hope to someone else in their battles. Hugs to you both 😍

  2. Sarah,
    You are beautiful, and strong, and wise, and compassionate. I know how much this exhausts you. I do. I see how much you give every moment of every day. Still every morning you rise and do it again. God is working through you. The holy Spirit is with you. And you were chosen for Naya. As much as this takes from you, I do not know of anyone else who could do it with such an abundance of love. You see the moments, and the steps....the rewards that come from truly knowing your child. I admire you. My prayers are with you both every day. And I will continue to do all I can to be there and help.