time is a gift...


"He gives strength to the weary, he strengthens the powerless. Youths grow tired and weary, the young stumble and fall, but those who hope in Yahweh will regain their strength, they will sprout wings like eagles, though they run they will not grow weary, though they walk they will never tire." 
Isaiah 40: 29-31

Todays readings spoke directly to me and where we are today with Courtney. HOPE gives strength to the weary. Our daughter is growing weary, very weary. 

She is having a harder time taking her tube feedings and digesting what is given. Her poor little tummy is just a mess. We have troubleshooted with the feeding team and have done what we could to adjust to her current needs. They seem to change by the day. 

She can no longer sit on her own and is having a hard time holding her head up without support. She is more comfortable in bed than in any other position for the majority of her day. She still smiles and snuggles into my arms. I am so very grateful for that. I know that I will hold those precious memories in my heart for decades to come. When Daddy gives her kisses she still giggles. Such a gift to us as her body slowly begins to shut down. 

I am not sure how much time we have, maybe a day, days or a week, possibly two at the most. Only God knows. She has once more surprised her Doctors who did not expect her to still be with us given her seizures and difficulty with feeding. But then that's what our Courtney has always done. She perseveres and pushes through the most difficult situations with a smile and a princess attitude to boot. 

Unfortunately with her weight loss, her liver and kidney issues and the severity of her seizures, unless God intends to grant us a miracle of stupendous ridiculously awesome proportions, our girls full healing will only come when she enters heavens gates and rushes into her Beloveds arms.  

When I spoke to the Doc yesterday he told me what to watch for and how to proceed to make sure Court has all she needs to be comfortable and at peace for the remainder of her time this side of heaven. He felt her time here could be counted on one hand given her symptoms but then you can never count Miss Courtney out. She is a fighter. 

So we wait. We love. We pray. We sing. We hold her and then we do it all over again. It is a privilege to love her all the way to the finish line. This is one race I will never forget. Thank you Lord for this time.